Few studies have examined the unique healthcare needs of the TG population and those that have done so have examined their needs within the context of the larger group of lesbians and gay and bisexual men. As a result, the health needs of the TG population remain largely unexplored.The lack of health research and information that focuses on the TG population has led to persistent health disparities and poor health outcomes. In the last three years national policy makers have called for a greater emphasis on research that focuses on this population as one that is independent from the collective LGB group and that focuses on their health needs and experiences.
According to the IOM and other policy makers…the following areas of research must be explored in order to build a solid foundation for LGBT health.Using a GT approach my study aims to explore the:… Social network influences onhealthcare utilizationPatterns of healthcare useQuality of healthcare encountersamong HIV positive TG women.
Of all gender (defined as male or female) and sexual (sexual orientation as in gay, lesbian or bisexual) minorities, TGW have higher rates of HIV morbidity and mortality.
And are twice as likely as their non-TG counterparts to be HIV infected.HIV prevalence ratesare estimated to range from 11-78%TGW suffer from high rates of HIV related morbidity and mortality due in part to the social isolation and discrimination encountered in general public and within the health care system, high risk behaviors such as commercial sex work and unprotected receptive anal intercourse, injection drug use, and factors such as inadequate access to HIV testing and HIV care.Once diagnosed, HIV+ TGW are least likely to establish and remain engaged in
…in the US and disclosure of one’s HIV status could lead to negative health and social outcomes…as a result they are often hard to reach and are underrepresented in healthcare utilization research.To address these barriers to participation I obtained a waiver of signed informed consent for my study and utilized aliases during the interview
18 years of age or olderDiagnosed within last 5 years
Prior to beginning recruitment for the pilot I worked with various agencies in the Marion County area to obtain data on the number of women that they had served in the previous year. These sites were felt to be good starting points for recruitment because they had provided services to the population of interest and because members of the research team had established relationships with them and collaborated with them on previous HIV-related studies. The numbers on this slide represent the number of women who accessed care coordination (or assistance with social and supportive services) or HIV medical services that were paid for with Ryan White Care Act Funds. The state of Indiana is divided into care coordination regions, of which MCPHD serves the largest number of PLWHA. While there is some overlap in the number of women seen at the clinics and ASO and the 32 served by the MCPHD, there are a total of 64 unique, HIV+ TGW that were served through the state and local health departments.Since the pilot aimed to recruit 5 TGW and the larger dissertation study 20-25 we felt initially confident that we would have a large enough sample from which we could recruit.
…Phase I: Who had given written consent to receive HIV-related mail from the collaborating agencies. The letters emphasized the voluntary nature of the study and provided recipients with information on how contact me if they were interested in participatingPhase II: to describe the study in further detail and encourage them to share information about the study with their TGW clients. …and provided copies of introductory letters to be mailed. Even though we knew this would possibly give us access only to women who had accessed care at least once in the previous 12 months and possibly miss other women who were HIV-positive and who had not received care in the 12 months prior to the start of the study. However, given the difficulty that researchers have in engaging this population in research our team felt that this was a good starting point. ***Future studies should use respondent driven sampling in order to reach those women who are HIV-positive and may have never accessed the system of care at all. We feel that the experiences of these women are incredibly and equally valuable as those who have accessed care at least once and that their perspectives will add to the our understanding of care utilization in this population.
Participation in key community events such as…I also attended a House Ball competition a drag type of performance which involves competitive runway walks, dance and “vogueing” with the purpose of passing for a specific gender.Most importantly I collaborated with a community gatekeeper to the TG community.
Fliers posted at three local infectious disease clinicsIn addition to the flyers that were distributed through the collaborating sites I also left copies of recruitment flyers with the women that I interviewed, a total of 3 and asked to them share information about the study with other women they may know.
Flier uses the rainbow colors associated with the LGBT populationAlso includes the transgender symbol in the upper left hand cornerIncluded a picture of myself to connect with AA Transwomen
Even though letters were mailed directly to potentially eligible participants, the opt-in approach that was employed for the pilot study was labor intensive and did not produce the targeted sample of 5 for the pilot.recruitment through the state health department was not at all effective during the pilot. I did however receive one participant through recruitment assistance from the local health department.While my attendance at community events such as Indy PRIDE and Black PRIDE increased my visibility in the community, helped me make additional contacts, and was community-based research practice, it did not seem to help with study recruitment. The lesson in that for me was just because the event is marketed as a LGBT event it may not be viewed as welcoming to the transgender community because they often do not feel like they fit within the broader lesbian, gay and bisexual group.Transgender peer helped me gain trust in the community.Staff at one infectious disease clinic preferred to make phone calls in addition to sending out letters. The administrative staff sent letters and the social workers or nurse practitioner called the women on the phone. I received a rather quick turn around with that approach and was able to complete one interview as a result.Recruitment flyer used for study did not contain the incentive amount for participation. Including this information could have made a difference in participation.
Participants felt more comfortable with face-to-face interviews in location of their choiceThe women in the pilot study identified themselves as and preferred to be called “women”, not transgendered women.While materials advertising the study need to contain the term transgendered woman, use of their preferred noun like “woman” or pronoun, like “she” during the interview shows sensitivity and acceptance of their gender status and may increase the likelihood that the women share information about the study with other women who are transgendered.The recruitment flyer that I used during the pilot did not contain the dollar amount of the incentive that was being offered. If I had included this information initially it may have increased interest in my study and willingness to participate.Initially I indicated that I wanted to interview only those TGW who had tested positive within 5 years prior to the start of the study. Even though we knew this would possibly give us access only to women who had accessed care at least once in the previous 12 months and possibly miss other women who were HIV-positive and who had not received care in the 12 months prior to the start of the study. However, given the difficulty that researchers have in engaging this population in research our team felt that this was a good starting point. What I learned from the healthcare providers at the collaborating agencies was that they had women who expressed interest in the study, but who had been HIV positive for more than five years. Based on this feedback I went back to the county health depart and requested a data set on the # of HIV-positive TGW by year of diagnosis. What I found was that 18/45 TGW tested had a reported HIV diagnosis date within five years prior to the start of the study. Of those 18, one was deceased leaving 17 potentially eligible participants. 17/44= 38.6%. Going forward I will use less restrictive inclusion criteria for the larger studyWhile the interview guide contained questions about ways of seeking healthcare I did not explicitly ask the women to critique the recruitment flyer, process or to suggest other places for recruitment.
In summary it took about 3 months and 52 recruitment flyers to recruit 3 women. This is incredibly slow and at this pace will take a long time to reach the overall sample of 20-25 women. So what remains to be done? The first step is to form a…Board will advise on most effective recruitment strategies, retool the recruitment flyers, provide input on interview guide questions and new recruitment sites***Future studies should use respondent driven sampling in order to reach those women who are HIV-positive and may have never accessed the system of care at all. We feel that the experiences of these women are incredibly and equally valuable as those who have accessed care at least once and that their perspectives will add to the our understanding of care utilization in this population.
Hines mnrs presentation
How to Reach the Hidden:Strategies for Recruiting HIV-PositiveTransgender WomenDana D. Hines, MSN, RNPredoctoral Fellow
Acknowledgements• Research Mentors & Co-Investigators– Dr. Barbara HabermannIndiana University School of Nursing-Indianapolis– Dr. Eric WrightRichard M. Fairbanks School of Public Health-IUPUI• Funding– F31 NR013864-01– T32 Training in Health Behaviors Research-IUPUI
Objectives• Study overview• Discuss recruitment strategies• Describe recruitment challenges• Outline lessons learned• Propose new strategies for recruitment
Has been limitedIncluded in the broaderscope of LGB studiesPolicy makers havecalled for greateremphasis on transgenderhealthTransgender Research
• Using a grounded theoryapproach and qualitativeinterviews, this study willexplore:– Social network influences onhealthcare utilization– Patterns of healthcare use– Quality of healthcareencountersResearch Priorities:Social and structural influences onhealthcareInequities in healthcare accessTransgender specific health needsStudy Overview & Aims
Transgender Women• Transgender women(TGW)– Biological men who livetheir lives as women.– Most marginalized of allgender and sexualminorities– Increased risk forviolence anddiscrimination.
Transgender Women and HIV High rates of HIV prevalence High rates of morbidity and mortality Least likely to establish and remain engaged in HIVcare
HIV-Related Stigma• HIV remains one of themost stigmatizingillnesses• HIV positive TGWespecially face socialmarginalization andstigma related to theirgender identity and HIVstatus
Pilot Study Aims• Test recruitment strategies andappropriateness of interview guide• Recruit 5 HIV-positive TGW using purposiveand snowball sampling
Pre-recruitment phaseRecruitment/Collaborating Sites Number of HIV+ TGW(served in previous 12months)Indiana State Department of Health (ISDH) 34*Marion County Public Health Department (MCPHD) 32*Wishard Infectious Disease Clinic 12IU Health Life Care Infectious Disease Clinic 10Community Infectious Disease of Indiana ~5The Damien Center (AIDS service organization( ASO) 17Brothers United of Indianapolis (ASO) 68***Represents unique and non-overlapping TGW**Includes both HIV+/- TGWData as of 1/201266
Recruitment• Phase I– Introductory letters andstudy flyers were mailedto HIV + TGW– Flyers posted atcollaborating clinics andASO.• Phase II– Held informationmeetings with staff atcollaborating agencies– Posted recruitmentflyers in areasdesignated by staff
Other Recruitment StrategiesIndy Gay PRIDEIndiana AIDS WalkTalbott Street Night ClubBlack PRIDE Festival
Recruitment Timeline, Activities & OutcomesDate Activity Number ofrecruitmentflyersdistributedNo. lettersreturnedNumber ofsuccessfulinterviewsscheduled8/11/12 Attended Indy Black PRIDE 8 NA 08/17/12 Study overview and recruitment meeting--state health department10 3 09/14/12 Study overview and recruitment meetingtransgender peer contact5 NA 19/25/12 Study overview meeting with localpharmaceutical representative3 NA 09/27/12 Study overview and recruitment meeting- -county health department5 0 110/10/12 Study overview and recruitment meeting-Life Care clinic14 0 111/5/12 Study overview and recruitment meeting-Damien Center7 0 052 N=3
Recruitment FlyerIf you answered yes to the questions above you may beable to take part in a study about the experiences ofseeking, entering, and staying in HIV care. Informationfrom this study will increase knowledge and awareness oftransgender women’s HIV health needs and improve theHIV healthcare experiences of transgender women.Are you a transgender woman who is:Living with HIV/AIDS and at least 18years 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. Yourname and personal information are not required to participate. A gift cardwill be given to all women who complete the interviews.Call Dana H. RN, MSNIndiana University School of Nursingat (317) 759-3885 for more information
Lessons Learned• Opt-in recruitment• Recruitment through the state healthdepartment• Community events• Community gate-keeper (transgender peer)• Phone calls versus letters
Lessons Learned• Face-to-face interviews preferred• “I am a woman, just like you”• Include incentives on recruitment flyer• Employ less restrictive inclusion criteria• Include question about other strategies forrecruitment
Next Steps/New Directions• Form a transgenderadvisory board• Respondent drivensampling• Increase recruitmentincentive from $25 to$50• Include incentive onrecruitment flyers• Include question aboutbest strategies forrecruitment in interview
Contact InformationResearch TeamDana Hines, RN, MSNPredoctoral FellowIndiana University School of Nursingdcheatem@iupui.eduBarbara Habermann, PhD, RN, FAANIndiana University School of Nursinghabermab@iupui.eduEric Wright, PhDRichard M. Fairbanks School of Public Health-IUPUIewright@iupui.edu