Dana hines anac conference slides 10.14.16
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This study examined circumstances surrounding HIV testing and factors that facilitate or impede linkage to care among transwomen in Indiana. Eighteen transwomen participated in interviews. Routine testing was prompted by intake at prisons/jails or other health screenings, while self-initiated testing occurred due to perceived risk or a new relationship. Recommended testing followed a partner's positive diagnosis. Timely linkage occurred with psychosocial support, peer guidance, and direct referrals. Lack of privacy, denial, and poor information delayed care. Policy changes are needed to better address the unique needs of transwomen in testing and care programs.
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Dana hines anac conference slides 10.14.16
- 1. Dana D. Hines, PhD, MSN, RN Assistant Professor of Nursing George Washington University
- 2. Acknowledgements This research was supported by the: • National Institutes of Health/National Institute of Nursing Research (F31 NR013864-01) and T32NR0706 • Indiana University School of Nursing Research Incentive Fund • Midwest Nursing Research Society • Sigma Theta Tau International
- 3. Introduction • Transwomen are disproportionately impacted by HIV – 28% of transwomen in the US are HIV-positive • Uptake of HIV testing is low among transwomen • Have poor outcomes at each step along the HIV Care Continuum • Dearth of trans-specific, evidence- based/informed interventions
- 4. Background • Indiana moderate HIV incidence state, but has low levels of public health prevention and investment in prevention services • Delays in linkage to care common in publicly funded testing sites • 45% of people living with HIV in Indiana not linked to medical care • HIV increasing among transwomen in Indiana
- 5. Aims • Describe circumstances by which transwomen in Indiana receive HIV testing • Identify factors that facilitate and impeded linkage to care
- 6. Methods • Network Episode Model – Sociological health model • Research Design – Qualitative Descriptive • Data Collection – Face-to-face, in-depth interviews • Data Analysis – Content analysis
- 7. • Members of the coding team read transcripts in their entirety • Segments of transcripts related to study aims were highlighted • Text units coded • Data display tables used to organize codes by aims • Narrative descriptions written for each topic • Coding team met regularly to verify codes, discuss topics, and reach consensus on categories Data Analysis
- 8. Participant Demographics 56% 22% 5% 6% 11% Race/Ethnicity Black White Latina Native American/ Pacific Islander Multi-racial N=18
- 9. Participant Demographics • Ranged in age from 21-60 • Almost half (n=8) diagnosed between the ages of 20-29 • Most (n=10) were unemployed • Most (n=10) identified as heterosexual • Almost (n=17) all insured • Majority (n=17) on ART
- 10. Participant Demographics 61% (n=11) 50%(n=9) 61% (n=11) 39% (n=7) 83% (n=15)
- 11. Circumstances Prompting Routine Testing Routine Testing Pathway (n=10) Intake process for prison/jail Illness symptoms Other health screening procedures Prison/jail n=4 Hospital n=4 Plasma center n=2
- 12. Circumstances Prompting Self-Initiated Testing Self-Initiated Testing Pathway (n=4) Self-perceived risk Sexual identity Knowing someone with HIV Did not feel well New romantic relationship Physician office =2 HIV CTS=2
- 13. Circumstances Prompting Recommended Testing Recommended Testing Pathway (n=4) Romantic partner tested positive Health care provider suggested testing Physician office =2 HIV CTS=2
- 14. Linkage to Care • 61% (n=11) linked to care right away (within 3 months of diagnosis) • 39% (n=7) delayed linkage to care • Delays occurred among participants tested in clinical and non-clinical sites • No delays were reported by participants in the recommended testing pathway
- 15. Hospital/ED HIV CTS Prisons/jails Plasma Centers Physician offices Psychosocial support Verbal encouragement Guidance from friend or partner Direct referrals to care Facilitated linkage to care
- 16. Hospital/ED HIV CTS Prisons/jails Plasma Centers Physician offices Unready to face new diagnosis Concerns about lack of privacy & confidentiality Lack of informational support • post-test counseling and direct referrals Adverse life events Interrupted linkage to care
- 17. Unready to face new diagnosis Concerns about lack of privacy & confidentiality Lack of informational support • post-test counseling and direct referrals Adverse life events Delayers Psychosocial Support Educational/informational support Illness Seeing others die Persistence from HCP Substance abuse treatment Motivating Factors Finally connect to care
- 18. Discussion • Social circumstances (romantic relationships, social network characteristics, sexual identity) prompt HIV testing • Routine testing is an good approach for increasing HIV testing and early diagnosis among transwomen • Women whose routine testing was prompted by illness symptoms had advanced disease
- 19. Discussion • Psychosocial support, peer guidance, and direct referrals support timely linkage to care • Lack of privacy/confidentiality, denial and lack of education delay linkage to care • Transwomen with greater adverse life circumstances need ongoing and continuous support for entering care
- 20. Practice Implications • Findings related to barriers to care may help: – Inform a categorization or alert system to identify transwomen who are at high risk for entering care – Clinicians prioritize those patients who could benefit from early and persistent support with linking to HIV care
- 21. Policy Implications • In 2013 transgender people in Indiana accounted for the fewest HIV tests administered by federally funded testing sites – Reportedly had no positive tests • In June 2015 HRSA crosswalk outlined services most likely to advance the care continuum
- 23. Conclusions • HIV testing and linkage to care are closed tied to social characteristics, behaviors, and relationships • Transwomen should be screened for barriers to care at each step along the continuum • Federal funded agencies aimed at increasing uptake of HIV testing and linkage to care should include a peer-led component • HIV crosswalks may need to be adapted to meet the unique needs of transwomen
- 24. Contact Information Dana D. Hines, PhD, MSN, RN 1919 Pennsylvania NW, Suite 500 Washington, DC 20006 dana_hines2@gwu.edu
Editor's Notes
- As we heard from Dr. Tonia Poteat yesterday, that translates into about 1 in 5 transwomen in the US are living with HIV, 34 fold greater than the general population For example transwomen are more likely to be diagnosed with advanced HIV disease or AIDS for various reasons (trans stigma and discrimination and fear of testing). Transwomen also have poor linkage to care rates, are less likely to remain engaged in care, and for those reasons are less likely to achieve viral load suppression. To date only four of the 127 evidence-based or informed practices for HIV prevention endorse by the CDC, only four have been based on studies that included trans people and those numbers were very small.
- HIV incidence among trans people is on the risk in Indiana, therefore, additional information is needed to fully identify their HIV prevention, care and service needs, and gaps in services The bulk on research on trans populations has been conducted in major coastal cities and findings from those may not represent the experiences of transwomen living in states such as Indiana, where fewer trans-specific resources exist
- Describe the how and why or the circumstances by which transwomen in Indiana are tested for HIV.
- Text units such as…
- At the time of the interviews, more than half (n=12) had been living with HIV between 1 and 5 years Those who were employed worked in the entertainment, retail, and warehousing industries Almost all were on some form of Ryan White, or state and federal funded insurance programs
- Slightly more than one-third reported mental health problems such as anxiety, depression, SI, low self-esteem, schizophrenia, and bipolar disorder.
- So why, how, and where was this sample of transwomen tested? For the majority HIV testing was routine-meaning that they were tested as part of another screening process. Illness symptoms that were not initially thought to be HIV-related. All (n=4) who were tested because of illness symptoms self-reported illnesses that were consistent with advanced HIV disease. PCP pneumonia, swollen lymph nodes, and dehydration. Quotes: Prison— I caught prostitution [charge] and part of the plea agreement was I have an HIV test before going to the reception diagnostic center (RDC). I went to RDC, they drew blood…and my first introduction to HIV was when I tested positive. Illness symptoms The first time I found out that I had HIV I was in the hospital. I think I had HIV for a long time… [and] didn’t feel that I needed to get it checked…I wasn’t having symptoms…I just thought I had a cold…I went to the hospital and they told me that they needed to admit me, but I couldn’t stay …I was taking some antibiotics and stuff and nothing was helping. That next day I went back to the hospital and I passed out. I don’t remember anything else…They had to put a thing down my throat…When I woke up [from the coma], they knew I had HIV. plasma I was donating blood just to make a little extra money…I came in one day and was about to donate and was told that I was HIV- because you know they blood test you.”
- As I get in relationships, we get tested. So we got tested several times together, both of us negative. And I will never forget the time we got tested, and it said positive. I couldn’t understand. He was the only person I had been with…I didn’t understand. One who felt ill said, , “I just didn’t feel right and I decided to go get tested. [At the time] I could hardly get up [and] was not as spunky...I just wanted to find out.”
- I linked up with an ex-boyfriend and we had some unsafe sex. A couple of months later, I got a phone call from the health department saying that I needed to come in to be tested. That’s when I found out that I was HIV-positive. This is a group that may not have sought testing in the absence of the other circumstances. For transwomen in particular this is important because prior research shows that individuals who are most at risk for HIV (those who use drugs and alcohol, and who engage in sex when high are less likely to have been tested for HIV (Logie, et. al). In addition, stigmatized populations like transwomen often underestimate their risk for HIV and avoid getting tested in order to prevent further stigmatization, isolation, and discrimination (Golub, et. al).
- Slightly more, 5 out of seven who delayed care were tested in a non-clinical setting Over the next few slides we will look at linkage to care patterns by testing pathways
- Examples of psychosocial support included primary care providers reassuring participants that they would not die and answering participants’ questions about their new diagnosis. Participants also used phrases like, “they were all real nice and sweet to me,” “they handled me with kid gloves,” and they were “very accepting of who I was” to describe the providers who assisted them with getting linked to care. One participant, who was tested by her primary care physician, said, When I first found out [that I had] HIV my mind was just racing and I was on the verge of [giving] up. I started going to counseling and the doctor [started] talking to me and telling me that having HIV doesn’t mean that I’m going to die soon…He encouraged me to work through it and then I just started going to get treatment, my mood started changing, and I started accepting what I had. Guidance from a friend I went to work and talked with another [transgender] girl. She guided me along because she was HIV-positive as well…After talking with her I went to care coordination, where I learned all the ins and outs [of HIV care], getting a good doctor, staying safe, and not infecting other people.
- Some participants delayed entering HIV care because they were in shock, were angry, not ready to “deal with it,” and/or because they were “living in denial” about their HIV. Adverse life events such as substance abuse, repeat incarceration and homelessness also interrupted linkage to care. Concerns about privacy [The clinic] was one them places where everybody who is positive goes. I didn’t want no one to see me. I just wanted to be so discreet about it and everything. I wanted everything to be done and taken care of, but I wanted it to be discreet still…I felt like everybody in the office would be staring at me and know that I am positive. Adverse life events I just wanted to die. Everybody that was around me was around me for hustling and I just felt horrible. I was using meth and awful drugs, enough to kill me. I don’t think I really cared if I would have died or not. [When] I went to the doctor and I broke down saying the reason why I do this stuff is because I’m depressed, I have low self-esteem, I felt alone. I was messing with heroin. I overdosed a couple of times. It was depression and self-medicating with drugs.
- Support from friends and substance abuse treatment When I finally got out of prison I met some people that helped me understand what HIV care was...They would tell me about viral load and CD4 counts and all of this stuff. They did not judge me and they loved me until I could learn to love myself...They [also] introduced me to a very private doctor who all of the [transgender] girls went to. Educational support [I] remembered the pamphlets and education and everything that said if it [HIV] was caught early that it was a good thing and they can get you undetectable. So I told myself it’s time to stop all the crying and get some help. Provider persistance I was in denial for a long time, from 1992 to 2003. My numbers [HIV viral load] started going up…I was still feeling healthy, putting on weight, and doing the things that I normally do…They kept calling me and kept calling me [to start treatment]. The pressure helped the denial stage end…I gave in and told them that I would do it, so they started me on the [HIV] regimen in prison.
- Which was observed among several women in our study---indicates missed opportunities for testing
- Over 17K tests performed and transpeople accounted for about 1% Our study shows that transwomen in Indiana are getting tested and testing positive could be that the federally funded testing sites are not places where transwomen would normally go for testing or that they were tested but categorized as MSM According to the Indiana Jurisdictional Plan federally funded HIV testing occurs is routinely offered in HIV CTS and county hospitals, but not private physician offices, prisons/jails or plasma centers. It is possible that uptake of HIV testing in Indiana could be increased by allocating federal funding for HIV testing to places where transwomen are most likely to get tested In June 2015 HRSA released a crosswalk of services…for Ryan White grantees and their planning bodies to use as a guide for identifying specific services to fund and prioritize. Indiana receives Parts, A, B, and C
- Substance abuse is listed as one of the services most likely to advance the care continuum. Since many transwomen in our study reported a history of substance abuse and listed substance abuse as a barrier to care, this portion of the crosswalk aligns with the needs of transwomen in our study and based on what we know about substance abuse in transwomen in general is fitting for the population overall. Notably absent from the crosswalk are psychosocial support and mental health services, two services participants in our study mentioned as being helpful in linking them to care. Our findings compared with what is outlined in the crosswalk suggest that Indiana (and other cities) may need to tailor their crosswalk of services so that higher priority is given to those services that will be most beneficial to transwomen getting testing and linking to medical care
- And be embedded in the social network of transwomen