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Anac slides 2017 (2)
Community-engaged approaches were used to recruit 18 transgender women living with HIV in Indiana for a research study. The recruitment process took 21 months and involved partnering with community organizations, advisory boards, and community leaders. Most participants were referred by recruitment sites and community advisory board members, highlighting the importance of community engagement. The study found that relationship-building, giving back to the community, and addressing issues of importance to transgender women were key to overcoming barriers to research participation.
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Anac slides 2017 (2)
- 1. Community-Engaged Approaches for Recruiting TransgenderWomen in Health Research Dana D. Hines, PhD, RN Assistant Professor of Nursing
- 2. Aims • Summary challengeswith recruiting marginalized populations into health research • Describe recruitment efforts used to engage 18 trans women living with HIV in health research • Outline strategies that can be employed when engaging traditionally hard to reach populations in research
- 3. Organizing Lens TheNetwork Episode Model (NEM) was used as an organizing lens for study Assertions of the NEM Social networks and health are inextricably linked Individuals socialize with those who are most like them Social networks are a primary source for health information Pescosolido BA (1992).
- 4. Recruitment Challenges • ResearcherLevel • No personal connections to the community of interest • Being an “outsider” • Establishing trust • Lack of time to build/sustain community partnerships • Participant Level • Mistrust • Fear of being outed • Lack of transportation to study site • Lack of shared social identities/experiences with research team • Leads to: • Slow recruitment • Inability to achieve/attain set sample size • Inability to carry out research aims • Inability to create new knowledge, interventions, so on. • **Hard to Reach**
- 5. The Power ofOne
- 6. Study Details • Setting •Large Midwestern city in central Indiana • Inspiration for the study • Community informed/inspired • Lack of data/information • Aims • Describe the illness trajectories of transgender women living with HIV • Eligibility • Living with HIV, self-identify as a transgender woman, 18+ years of age, diagnosed with HIV within the past five years, and had accessed HIV-related care within the previous 12 months. • Methods • Grounded theory • Face-to-face interviews • $25 incentive
- 7. Active Recruitment Community/ Stakeholder engagement Passive Recruitment Met with communitypartners Identified champions/supporters Guidance on recruitment approach Established/built trust Distributed flyers at key events Engaged in cultural events Face-to-face recruitment Mailed recruitment flyers Posted flyers at collaborating sites Can you reach them? If so, how? Phase I Activities
- 8. Population Estimate Community partnersNumber of transgender women living with HIV served in the 12 months prior to the pilot study State health department 34* County health department 32* County infectious disease clinic 12 University hospital affiliated infectious disease clinic 10 Hospital affiliated infectious disease clinic ~5 AIDS service organization #1 17 AIDS service organization #2 Primarily serving black LGBT individuals 68**
- 9. If you answeredyes to the questions above you may be able to take part in a study about the experiences of seeking, entering, and staying in HIV care. Information from this study will increase knowledge and awareness of transgender women’s HIV health needs and improve the HIV healthcare experiences of transgender women. Are you a transgender woman who is: Living with HIV/AIDS and at least 18 years or older? Please note that all eligible participants will be asked to take part in a one-on-one 60-90 minute interview. Interviews will be held in private location. Your name and personal information are not required to participate. A gift card will be given to all women who complete the interviews. Call Dana H. RN, MSN Indiana University School of Nursing at (317) 759-3885 for more information Originalstudyflyer
- 10. Phase I Outcomes •Lasted three months (Aug-Nov 2012) • Distributed 52 recruitment flyers • 36 mailed from collaborating sites, the remainder via f2f events • Progress slow Progress slow • 3 participants over three months
- 11. Recruitment Modifications • Establisheda CAB • Revised recruitment flyers • Broadened inclusion criteria: • Changed criteria from diagnosed “with HIV in last five years to “ever diagnosed with HIV.” • Changed from accessed in the last 12 months to “ever accessed care.” • Increased incentive to $50 • Community engagement
- 12. Being there… Indy GayPRIDE Indiana AIDS Walk Talbott Street Night Club Black PRIDE Festival Brothers United
- 13. Giving back andinvesting time/resources • DeCommunity input on interview guide questions • Venue based recruitment informed by CAB • Community input on design and distribution of research materials (flyers, palm cards, etc.) • Being consistent in showing my support* • Reciprocal giving (pro-bono grant writing, QI/QA support) • Emphasizing our shared identities
- 14. Board Member Race/Ethnicity Gender Sexual Orientation Affiliation/Representative CAB member1 African American Transgender woman Heterosexual Program manager for AIDS service organization Gatekeeper to transgender community CAB member 2 (and outreach worker) African American Cisgender woman Not reported Community-based outreach worker for substance abuse and commercial sex work CAB member 3 African American Cisgender man Gay Community-based outreach worker House Ball Community House Father CAB member 4 Black Hispanic Transgender woman Heterosexual Drag queen/performer CAB member 5 African American Transgender woman Not reported Commercial sex worker Community Advisory Board
- 15. Would you liketo help improve the healthcare experiences of transgender women living with HIV? Would you be willing to share your experiences about accessing health care? Would you like to help educate and inform health care providers about transgender women’s health needs? Are you a transgender woman living with HIV? Are you willing to participate in a 60-90 minute interview with a nurse researcher? You will receive a $50 gift card for your time. If yes, then I would like to hear your story!!! Dana, RN, MSN Indiana University School of Nursing I am a nurse researcher, advocate for transgender equality, and champion for quality HIV care. Contact me at (317) 426-8102 for more information or to schedule an interview. Your name and personal information are not required to participate. Dana317- 426-8102 FlyerforHIVbasedclinicor carecoordinationagencies Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102
- 16. Would you liketo help improve the healthcare experiences of transgender women? Would you be willing to share your experiences about accessing health care? Would you like to help educate and inform health care providers about transgender women’s health needs? Are you a transgender woman ? Are you willing to participate in a 60-90 minute interview with a nurse researcher? You will receive a $50 gift card for your time. If yes, then I would like to hear your story!!! Dana, RN, MSN Indiana University School of Nursing I am a nurse researcher, advocate for transgender equality, and champion for quality care. Contact me at (317) 426-8102 for more information or to schedule an interview. Your name and personal information are not required to participate. Flyerforgeneral recruitmentvenues Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102 Dana317- 426-8102
- 17. Recruitment Flyer Palm Cards Frontof card Back of card Want to share your story about accessing health care? Want to help improve care for other transgender women? Flip me over to find out how!!! How: Participate in a 60-90 minute interview. $50 gift card for your time. When/where: A time and place of your choice. With: Dana, a nurse researcher at IUPUI. Call (317) 426-8102 for more info or to schedule your interview. Palmcardstobeused onlybyCABmembers
- 18. Phase II Outcomes/Results •Focused heavily on community involvement and engagement • Lasted 18 months (Jan 2013-July 2014) • Recruited 15 trans women
- 19. Participant Demographics • N=18 •10=AA/Black • 4= White • 1= Hispanic/Latina • 1=Native American • 1= Native American/Pacific Islander • Most (n=12) diagnosed with HIV within 5 years prior to the study • n=3 living with HIV 20+ years • Most between the ages of 20-29 (n=8) and 18-19 (n=5) at the time of their initial diagnosis
- 20. Participants by RecruitmentSite/Approach Site/Approach Recruitment/Collaborating Site 7 (39%) • Recruitment site 1 (largest CC agency in the state) • 4 (57%) • Recruitment site 2 (hospital-affiliated medical home) • 2 • Recruitment site 3 (public hospital affiliated medical home) • 1 CAB member 7 (39%) Recruitment flyer from a friend 4 (22%)
- 21. Participants by Raceand Recruitment Site/Approach Site/Approach Race Number • Recruitment site 1 (largest CC agency in the state) 2=White 1=Hawaiian/Pacific Islander 1=Multi-racial • 4 (57%) • Recruitment site 2 (hospital- affiliated medical home) 1=AA 1-White • 2 • Recruitment site 3 (public hospital affiliated medical home) 1=AA • 1 Recruitment flyer from a friend 2=AA 1=white 1=Multi-racial 4 (22%)
- 22. Participants by Raceand CAB Member CAB Member Occupation Gender Race/Ethnicity No. Participants Participant Race/Ethnicity 1 Program manager at CBO Trans woman AA n=2 1=AA 1=HL 2 Outreach for sex workers Cisgender woman AA N=4 AA 3 Staff CBO Gay man AA n=1 AA 4 Performer Trans woman AA 0 5 Sex worker Trans woman AA 0
- 23. Key Finding #1 •Community-engaged recruitment strategies take time • 21 months, two phases Is this feasible??? • No. participants recruited per month • No. participants retained in study
- 24. Comparison to otherpublished GT studies Study Timeline No. participants recruited Keeping hope possible: A grounded theory study of the hope and experience of parental caregivers who have children in treatment for cancer (Bally, et al 2014). 13 months 16 I am normal: Claiming normalcy in Christian- identified HIV-infected adolescent and emerging adult males (Smith, et al. 2016). 16 months 21 Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: A qualitative study (Lavery, et al. 2001). 19 months 32 Current study 21 months 18
- 25. Key Finding #2 •Majority of participants referred to study from recruitment sites and by CAB members • Fewer learned about study from a recruitment flyer • These findings underscore the importance of partnering with community-based agencies and clinics that serve trans women and engaging community gatekeepers and community leaders in the recruitment process
- 26. Consistency with existingresearch • “Giving back” • Effective strategy in overcoming recruitment barriers (Ammerman, et al., 2002). • Trusted health care providers • TW more likely to participate in HIV vaccine trials when recommended by a trusted HCP (Andrasik et al., 2014). • Advisory Boards • Effective in recruiting trans participants for the Adolescent Trials Network (Siskind, et al. 2016) • Representative research team • Health research among trans participants increase when trans people or trans friendly research staff were involved in data collection and recruitment (Owen-Smith, et al. 2016).
- 27. Key Finding #3 •Most AA participants were referred by CAB members (n=6, 60%) • Fewer by friend or recruitment site (n=2) • Findings suggest that AA trans women may be more likely to engage in health research suggested by a community leader than friend or staff member at recruitment site • Most White participants (3 out of 4) were referred by staff at a recruitment site. • Findings suggest that White trans women may be more inclined to participate in research studies when suggested by a member of their care team
- 28. Limitations • Generalizability • Geographiclocation • Research method/design • Transferability • Doctoral scholar- academic researcher • Inclusion criteria • Opt-in only recruitment
- 29. Closing Quotes-Benefits toCommunity “You’ve been very instrumental in paying attention to the needs of transgender people, not scared to ask questions, and not scared to embrace us. As an RN, you could be doing your doctorate work on anything in the whole wide world but you have chosen to do your doctorate study on transgender issues, and that means a great deal to me.”
- 30. Closing Quotes-Benefits toCommunity “It’s an honor for someone to take time out of their life and schedule, to include us into your life, because at the end of the day, we all have our own agenda, we all have our own life, but we’re all connected. When my buddy told me that you were doing a study and you get something from it, like you probably never noticed this but we actually just killed two birds with one stone. Like you get something out of it, I get something out of it.”
- 31. Closing Quotes-Benefits toCommunity “It feels good to talk to you. Something like this should be done a more often, a regular basis, because I think that a lot of us have a lot to talk about and a lot of us have a lot to deal with. A lot of us keep it bottled up. And being able to express it and get it out there in the open, it says a lot for maybe society is starting to recognize that we’re just as human as they are. You don’t have to shun us away with like we’ve got leprosy. This work will help and it should be done more often.”
- 32. Conclusions • Recruiting traditionallyhard to reach populations for health research requires an investment of time and commitment to the community • Giving back is the first step towards building a “Deep fund of good will” (Passmore, et al., 2016). • Reciprocal giving facilitates recruitment efforts and sustains partnerships • Community-engagement plays a key role in connecting researchers to key communities
- 33. References • Pescosolido BA.Beyond rational choice: The social dynamics of how people seek help. Am. J. Sociol. 1992:1096-1138. • Siskind RL, Andrasik M, Karuna ST, et al. Engaging Transgender People in NIH-Funded HIV/AIDS Clinical Trials Research. JAIDS. 2016;72(Suppl 3):S243. • Andrasik MP, Yoon R, Mooney J, et al. Exploring barriers and facilitators to participation of male-to-female transgender persons in preventive HIV vaccine clinical trials. Prev Sci. 2014;15(3):268-276. • Owen-Smith AA, Woodyatt C, Sineath RC, et al. Perceptions of Barriers to and Facilitators of Participation in Health Research Among Transgender People. Trans Health. 2016;1(1):187-196. • Passmore SR, Fryer CS, Butler III J, Garza MA, Thomas SB, Quinn SC. Building a" Deep Fund of Good Will": Reframing Research Engagement. JHCPU. 2016;27(2):722-740. • Bally JM, Duggleby W, Holtslander L, et al. Keeping hope possible: A grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer. Cancer Nurs. 2014;37(5):363- 372. • Smith ST, Dawson-Rose C, Blanchard J, Kools S, Butler D. “I Am Normal”: Claiming Normalcy in Christian- Identified HIV-Infected Adolescent and Emerging Adult Males. JANAC. 2016;27(6):835-848. • Lavery JV, Boyle J, Dickens BM, Maclean H, Singer PA. Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study. Lancet. 2001;358(9279):362-367.
- 34. Contact Information Dana D.Hines, PhD, RN Assistant Professor of Nursing George Washington University Dana_Hines2@gwu.edu 1919 Pennsylvania NW Suite 500 Washington, DC 20006
Editor's Notes
- #4 Aims of the study were to describe the social patterns and pathways of HIV care among transgender women living with HIV. The study was guided by grounded theory methods, which are used to describe a shared social process among a group of people. Assertions of the NEM that were central to the study
- #6 The Power of One Person and the In conducting my dissertation study,Social Patterns and Pathways of HIV Care among HIV-Positive Transgender Women it was my ambition to shed light on a population of women who are often overlooked, ridiculed, and misunderstood. I made it my personal mission to give voice to these women who were essentially voiceless and hidden, and to educate my peers and colleagues about the need to include them in research, and to treat them as human beings. Back in 2010 when I presented my idea for this study to the faculty in my research training program at Indiana University I was met with some resistance and encouraged to pursue a different topic. The concerns of the faculty were valid in that I could not answer the basic questions of, “How many people are transgender?” and “How many transgender people have HIV? All that I had to go on at the time were estimates from surveys that had been conducted in large metropolitan areas and a small, but slowly growing body of literature that suggested it was time to pay attention to the transgender population, and the words, wisdom, and passionate please of a talented woman and fierce advocate for the transgender community-Ms. Marissa Miller. I first met Marissa when I was working for a Ryan White HIV/AIDS Services Program in Indianapolis. At the time our paths crossed I was very early in my doctoral studies and trying to carve out my niche (nitch) in the research world. Marissa a long-time advocate for the trans community frequently attended our Ryan White Planning Council meetings and often challenged us about our lack of reporting data specific to the transgender community. Her words were loud and clear. She said, You all come here each month and you talk about what’s happening with the epidemic among MSM, men and women; but you all never talk about the transgender community. It’s like we don’t exist. Her words really resonated with me and the more I listened the more convinced I was that we were doing a disservice to the trans community. I started meeting with Marissa for lunch, coffee, talking to her more about her concerns. Over our period of interactions we developed a friendship and a sisterhood. This was my entre into transgender health research. Unfortunately-the anecdotal information that I had gathered throughout the course of interacting with Marissa and eventually other women in the trans community, was not quite enough to convince my then committee chairs that my proposed study concept was feasible or fundable. In addition, it wasn’t enough to say, “Well, we need to do this study because so little is known about this population.” But soon after, something major happened. In the spring of 2011, the Institute of Medicine released its groundbreaking report: The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. One charge issued by this community was that we needed to do more to support and fund research that explicitly focuses on the transgender community. I vividly remember the day that this report was released because I received an email from Dr. Susan Rawl with a link to the IOM report that read, “What an awesome argument you are making for the need for population. Over the next few slides I will discuss some of my research projects and then highlighte strategies used to engage the community I eventually went on to write my dissertation proposal and am happy to say that it was funded on the first submission by the National Institute of Nursing Research.
- #7 This particular city has the highest rates of HIV incidence and prevalence in Indiana and is served by several major Ryan White-funded HIV clinics and care coordination centers. While gaining greater visibility, the trans population is still fairly hidden and at the time this study (2011-2012) was conducted, trans health research was just beginning to emerge
- #8 Black pride, gay pride, ball room competitions
- #11 3 flyers returned d/t incorrect address; number likely much higher given the transient nature of the population Did not aggressively recruit so as not to exhaust the estimated small sample in the community
- #13 Community Enagement: How did I get here? I’ve already talked about the power of one, but the context of where I was professional at the time is also important Engaged in the community through work at the local health department Many connections with infectious disease clinics, care coordination sites, attended community events such as gay Pride and black pride, which eventually became Indiana Pride of Color. I had a strong presence in the HIV community already because of my profession. But that alone wasn’t enough to gain entre’ into the trans community. I knew that community engagement was the key. So I began attending other events such as Ball competitions, volunteering at LGBT agencies, offering pro bono grant writing, and other professional services. I also formed a community advisory board-naming Marissa as the lead of that group. This one community leader led me to other CAB members and helped me successfully recruit 18 transgender women living with HIV in Indiana
- #23 Recall that the NEM served as an organizing lens for this study. Two assertions of this model were evident in our recruitment outcomes: Individuals socialize/connect with those who are most like them Social networks are the primary source for health information
- #24 Two criteria commonly used to evaluate feasibility of recruitment methods is number of participants recruited per month and number of participants retained in the study Challenge with evaluating number of participants recruited through GT and other studies is that the timeframe is often not reported
- #26 Although we used a variety of recruitment approaches, ____ was most successful
- #28 While we made no attempt to recruit equal numbers of TW by race/ethnicity, the majority of our participants were AA Greater representation could be due to the racial composition of the research team and CAB or could have been reflective of the disproportionate impact of HIV on AA in Indiana Given that we were able to recruit a diverse sample, we suspect relationship building and giving back was helpful in reaching TW from other racial/ethnic groups
- #29 May not be generalizable beyond central Indiana where trans visibility is still relatively low in comparison to larger metro areas such as San Fran, NY, Miami, Chicago, DC. Therefore time needed to locate and identify these populations may be longer May not be practical for studies using other research designs Doctoral scholars may have fewer time constraints than academic researchers Focused solely on experiences of TW living with HIV and strategies may not work for recruiting HIV –negative TW Opt in only may yield a healthier, more homogenous sample
- #33 Sometimes requiring us to invest beyond our personal research agenda/goals