Hines mnrs presentation
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Summarizes lessons learned from a pilot study designed to test strategies used to recruit HIV positive transgender women for a grounded theory study.
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Hines mnrs presentation
- 1. How to Reach the Hidden: Strategies for Recruiting HIV-Positive Transgender Women Dana D. Hines, MSN, RN Predoctoral Fellow
- 2. Acknowledgements • Research Mentors & Co-Investigators – Dr. Barbara Habermann Indiana University School of Nursing-Indianapolis – Dr. Eric Wright Richard M. Fairbanks School of Public Health-IUPUI • Funding – F31 NR013864-01 – T32 Training in Health Behaviors Research-IUPUI
- 3. Objectives • Study overview • Discuss recruitment strategies • Describe recruitment challenges • Outline lessons learned • Propose new strategies for recruitment
- 4. Has been limited Included in the broader scope of LGB studies Policy makers have called for greater emphasis on transgender health Transgender Research
- 5. • Using a grounded theory approach and qualitative interviews, this study will explore: – Social network influences on healthcare utilization – Patterns of healthcare use – Quality of healthcare encounters Research Priorities: Social and structural influences on healthcare Inequities in healthcare access Transgender specific health needs Study Overview & Aims
- 6. Transgender Women • Transgender women (TGW) – Biological men who live their lives as women. – Most marginalized of all gender and sexual minorities – Increased risk for violence and discrimination.
- 7. Transgender Women and HIV High rates of HIV prevalence High rates of morbidity and mortality Least likely to establish and remain engaged in HIV care
- 8. HIV-Related Stigma • HIV remains one of the most stigmatizing illnesses • HIV positive TGW especially face social marginalization and stigma related to their gender identity and HIV status
- 9. Pilot Study Aims • Test recruitment strategies and appropriateness of interview guide • Recruit 5 HIV-positive TGW using purposive and snowball sampling
- 10. Pre-recruitment phase Recruitment/Collaborating Sites Number of HIV+ TGW (served in previous 12 months) Indiana State Department of Health (ISDH) 34* Marion County Public Health Department (MCPHD) 32* Wishard Infectious Disease Clinic 12 IU Health Life Care Infectious Disease Clinic 10 Community Infectious Disease of Indiana ~5 The Damien Center (AIDS service organization( ASO) 17 Brothers United of Indianapolis (ASO) 68** *Represents unique and non-overlapping TGW **Includes both HIV+/- TGW Data as of 1/2012 66
- 11. Recruitment • Phase I – Introductory letters and study flyers were mailed to HIV + TGW – Flyers posted at collaborating clinics and ASO. • Phase II – Held information meetings with staff at collaborating agencies – Posted recruitment flyers in areas designated by staff
- 12. Other Recruitment Strategies Indy Gay PRIDE Indiana AIDS Walk Talbott Street Night Club Black PRIDE Festival
- 13. Recruitment Timeline, Activities & Outcomes Date Activity Number of recruitment flyers distributed No. letters returned Number of successful interviews scheduled 8/11/12 Attended Indy Black PRIDE 8 NA 0 8/17/12 Study overview and recruitment meeting-- state health department 10 3 0 9/14/12 Study overview and recruitment meeting transgender peer contact 5 NA 1 9/25/12 Study overview meeting with local pharmaceutical representative 3 NA 0 9/27/12 Study overview and recruitment meeting- - county health department 5 0 1 10/10/12 Study overview and recruitment meeting- Life Care clinic 14 0 1 11/5/12 Study overview and recruitment meeting- Damien Center 7 0 0 52 N=3
- 14. Recruitment Flyer If you answered yes 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
- 15. Lessons Learned • Opt-in recruitment • Recruitment through the state health department • Community events • Community gate-keeper (transgender peer) • Phone calls versus letters
- 16. 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 for recruitment
- 17. Next Steps/New Directions • Form a transgender advisory board • Respondent driven sampling • Increase recruitment incentive from $25 to $50 • Include incentive on recruitment flyers • Include question about best strategies for recruitment in interview
- 18. Contact Information Research Team Dana Hines, RN, MSN Predoctoral Fellow Indiana University School of Nursing dcheatem@iupui.edu Barbara Habermann, PhD, RN, FAAN Indiana University School of Nursing habermab@iupui.edu Eric Wright, PhD Richard M. Fairbanks School of Public Health-IUPUI ewright@iupui.edu
Notes de l'éditeur
- 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.