Compassionate holistic care retains Latina trans women in HIV prevention services

A qualitative study has shown that having peer workers and adequate training of staff at all levels are key to ensuring trans-affirming care and retention of trans women in HIV prevention services. Latina transgender women are best served and engaged when they are given holistic care and services beyond HIV prevention, say Dr Sophia Zamudio‐Haas of the University of California San Francisco and colleagues.

In the US, 9.2% of trans people are living with HIV, compared to less than 0.5% of the general population. Several studies have shown that providing HIV prevention interventions for transgender women and gay and bisexual men together can alienate trans women. Despite trans women’s increased vulnerability to HIV – a risk further increased for Black and Latinx trans women – there is limited knowledge of the tailored care needed to best serve this population.

The study

The interview study was part of a larger study evaluating a PrEP intervention programme at two clinical sites in California. The larger study showed that trans-affirming clinics combined with community outreach significantly improved PrEP uptake in trans communities.

The intervention was trans-informed, providing multi-pronged holistic care. The services included general primary care; a drop-in clinic (with access to a private space for transgender patients to speak with each other); a gender-affirming clinician (who is bilingual with a reputation for providing trauma-informed, patient-centred care); patient navigators (two transgender women well-known within the local Latinx community, who provided social and pastoral support, and linked service users to wider support such as immigration and legal services); monthly groups and culturally-informed events that focused on health and wellbeing.

Find out more: Community-led trans-affirming care shown to improve PrEP uptake in trans communities

The interviews focused on the experiences of Latina transgender women and staff at one of the two sites. This was a primary care clinic in Oakland that had previously provided sexual health services to a predominantly Latinx community, but which recognised that it had not been providing adequate trans-centred care.

Dr Zamudio‐Haas and colleagues interviewed 11 trans women and five staff members (clinicians, peer health educators, security and janitors). The women mainly had low incomes, faced housing instability and had migrated from Latin America. Interviews were conducted between 2017 and 2020, in Spanish or English, based on participant preference.

Importance of trusted connections

An insecure migration status, experiences of transphobia in previous health settings or anticipating discrimination (due to accounts from others) created a fear of accessing healthcare. However, when participants had heard about the clinic from a trusted person – a friend or a peer health educator – they were encouraged to attend:

“My friends told me to come, but I didn’t want to… I’m very reserved… I had a lot of depression…when I came, I liked how they treated me.” – Victoria, 40 years old

While recommendations from trusted social networks brought most participants in for their initial visit, it was the quality of care they received and the trust established which ensured they were retained in care.

“Most all the new girls…are arriving from other countries…I have many who are arriving for asylum, all these girls perhaps come from their countries with a different mentality…I see how they don’t trust very well about the services in the clinics, because perhaps they have not had good experiences or they have not had any experience in the clinic, and they feel…. I have even heard comments that say they never thought they would be treated so well in a clinic…From the moment they enter the clinic, from the security person who is in front, they greet anyone; the cleaners, everyone there is very kind to them. They have had a very good experience with the whole clinic.” - Blanca, peer health educator

Non-clinical staff (such as receptionists, janitors and security) helped create a trusted space utset as they were often the first members of staff that services users interacted with when they entered the clinic. All staff were fluent in Spanish, many were native speakers, and were trained in providing trans-friendly and gender-affirming care.

“That cannot be overstated how critical it is. We’ve had registration staff, our front desk clerks, our pharmacy, our security guards, our lab, our medical assistants trained…by virtue of being here week after week, [trans patients] are constantly interacting with those departments, and so now there’s some practice under everyone’s belt.” – Aimee, clinician

Peer health educators helped create a supportive environment, helping service users navigate administrative and clinic settings, from changing their names on the system to attending appointments:

“Here it is very different. [The peer health educators] tell me an exact day…and they already accompany us. And even when it comes to going to the laboratory they accompany us. They take us…downstairs to get blood tests and they are there with us until we get out. That is a very nice experience…. We feel supported.” – Christina, age 35

Showing respect and respecting holistic needs

The intervention provided a person-centred approach, rather than a PrEP-focused approach. Practically this meant staff acknowledging each service user’s immediate needs or priorities (beyond HIV prevention) and establishing a sense of partnership in clinical appointments.

“I like the doctor, because she doesn’t make the decisions on her own, she has me participate in decision making and asks me if things are ok. If it’s not ok, well, she respects my opinion. And she tells me what I have to do and we have beautiful communication and I like that. This is the same with [my therapist], who I have begun to tell things I have never told anyone else. ” – Victoria, age 40

“When they arrive at the clinic, we want to offer them a good service and always be friendly, try to talk to them about things we have in common or try to help and understand them as best we can. Generally, some come with…problems with their partner or at work or they don’t have a job…my duty more than anything is to listen to them… I am not totally qualified to give them advice …but I think that by listening to them, sometimes they feel a little more comfortable” – Blanca, peer health educator

The majority of participants reported experiencing multiple historical and current traumas. Trans women, clinicians and peer health educators all talked about the out of hours crisis support peer health educators provided when the women faced an unexpected eviction or experienced sexual violence. The peer health educators had a critical role in creating social support “entre nosostras” (between us girls/ women); this environment of care and safety, strengthened through pastoral support and organised social events, also led to the women dropping into the clinic when they did not have any appointments. They used the space to discuss a range of topics including beauty regimes, taking hormones, immigration and general life events:

“And sometimes, when I’m feeling angry or I am in a bad mood, but I don’t want to take it out on anyone… well I stop by to see my friends. I come to the clinic here and it passes, I feel calm. I already feel relaxed and happy. ” – Clarisa, 44 years old

Logistical and infrastructural factors were key to the success of the intervention. While the clinic was geographically accessible and there were multiple transport links, the peer health educators provided alternative transportation arrangements for those unable to get to the clinic by themselves:

“Before the clinic I go to pick them up some who have difficulty walking or difficulty getting to the clinic, because we have patients like that…one of my co-workers and I take turns picking them up. Our work is also a little stressful, but we do it with a lot of good intentions.” - Julia, peer health educator

Considerations

A consistent gender-affirming and holistic approach throughout the clinic was key to the retainment of transgender women and a gateway to providing HIV prevention services.

“Our findings demonstrate that to successfully co-locate gender affirming care with PrEP services, PrEP provision was but one component of a broader, more holistic program in the context of a community-based clinic with extensive culturally specific expertise and responsive services,” say the authors.

While some of these approaches may be transferable to trans women of different ethnicities, the authors assert that no assumptions should be made about the applicability to trans men and other gender diverse people.

Compassionate care delivered by the peer health educators was a central component of this intervention and ‘fostered a healing space’, so it is important to consider the additional resources educators may need to sustain a stressful role providing services to people with complex needs.