Principal Investigator Lauren Brown, above, shared the project’s process map during a presentation with the pediatric HIV clinic she partnered with.
More than half (63 percent) of people living with HIV experience post-traumatic stress disorder (PTSD), compared to only five percent of the general population.
Paralleling PTSD rates for adults living with HIV, PTSD rates among youth living with HIV are significantly higher compared to their peers. Because of their age and HIV status, young people living with HIV also face unique barriers to preventing and addressing trauma. These barriers include misdiagnoses and challenges with following treatment plans.
Lauren Brown, PhD, LCSW, noticed this trend in her neighboring community in Shelby County, Tennessee. In Shelby County, young people ages 13 to 24 are the largest represented demographic for new HIV diagnoses at 36.1 percent of cases, when they only account for 16.1 percent of the population. Shelby County’s rate of new HIV diagnosis is more than double the US average, while its HIV prevalence is three times higher than average, further raising the number of young people living with HIV and consequently PTSD.
In partnership with a local pediatric HIV clinic, Brown created an EHE supplement project to address the needs of Shelby County’s large number of young people living with HIV who have experienced trauma. The project, titled, “Multi-methods to Inform the Implementation of Trauma-Informed Care for Youth Living with HIV in Memphis, TN,” used an implementation science (IS) focus to develop a culturally responsive, trauma-informed approach to HIV care. Its primary aims were to assess current clinic practices for trauma screening and care, and identify perceptions on the implementation of trauma-informed care.
Applying IS to Trauma-Informed HIV Care
To effectively develop and implement trauma-informed HIV care, Brown knew she would first need to engage the community to understand their current care system. To do this, she worked closely with clinic personnel to develop a process map—a visual planning tool that identifies and breaks down each step in a project from beginning to end.
Process map
The process map outlines patient experience interfacing with a pediatric HIV clinic system.
Key: Gray diamonds indicate decision points in which one service is utilized to determine the best next steps for patients that are tailored to their specific needs. Green triangles indicate current practice that is aligned with an organizational trauma-resilience framework of trauma-informed care. Green font indicates a practice identified that could benefit from increases in OTR practices or conditions. Purple font indicates practices promoting practices of inclusivity, safety, and wellness. Blue font indicates a practice promoting trauma responsive services.
“The process map helped me really get a strong foundation before I jumped in and just started interviewing staff, or started trying to implement interventions or make changes,” Brown said. “It served the purpose of building trust within the community, not just showing up and transplanting something from somewhere else.”
Brown’s next step was to develop a deeper understanding of the status quo, with the goal of leveraging the clinic’s strengths and identifying what personnel prioritized. First, Brown and her team of co-investigators conducted interviews with clinic personnel on perceived barriers and facilitators of trauma-informed care, analyzing them for cultural responsiveness. They then interviewed clinic patients and are now analyzing the interviews using the Organizational Trauma Resilience – Patient Reported Experience Measure (OTR-PREM).
OTR-PREM
The OTR-PREM is a novel, community-created instrument that measures organizational trauma resilience — the extent to which patients perceive care environments to be safe, stable, and nurturing. It focuses on people recently diagnosed with HIV in the South, who report high levels of PTSD compared with the general population.
The process map and informant interviews illuminated a largely positive perception of the clinic among both personnel and patients. Simultaneously, findings indicated that the clinic did not conduct trauma/PTSD screenings and assessments universally. They primarily focused on screening and assessing patients who presented with generalized depression and anxiety, or those who reported adverse childhood experiences.
Although there is often overlap between PTSD and depression, anxiety, and adverse childhood experiences, the latter do not always align with PTSD symptoms, creating gaps in behavioral health care. This highlights the insufficient integration of behavioral health services in HIV, which reinforces existing barriers to preventing and addressing trauma for young people living with HIV.
“Trauma has again and again gone unnoticed, so people aren’t aware of the PTSD rates. That means we’re misidentifying trauma, which is actually impairing patients’ abilities to engage in their treatment plans,” Brown said.
The process map discussions led clinic personnel to not only consider implementing universal trauma/PTSD screenings, but also examine their use of the adverse childhood experience questionnaire as an indicator of future health outcomes. Together, Brown and clinic personnel explored how they could instead use the positive childhood experience measure.
“The state of Tennessee’s Department of Health has found that the positive childhood experience measure is potentially an even more robust indicator of health outcomes,” Brown said. “We’re trying to move towards questionnaires that are less activating for patients and personnel, without avoiding asking about exposures, because that’s an important piece of this, too.”
Brown shared that the clinic personnel were unanimous in their support of integrating trauma-informed care, recognizing it as a core piece of HIV care moving forward.
Next Steps: Developing a Multi-level Trauma-Informed Care Intervention
By identifying the clinic’s current trauma screening and assessment practices, Brown gained valuable insight that would help inform the clinic intervention. As a multi-level intervention, it addresses many health determinants to target disparities in HIV prevalence, ultimately creating an approach to trauma-informed care that can apply to a wide range of patient experiences. Brown’s team started building the intervention with the support of a K01 award from the National Institute of Mental Health, and has two primary aims in mind:
- Provide training to clinic personnel on integrating trauma-informed HIV care, and
- Implement trauma-informed HIV screening and care practices in the clinic.
“Now that we have the pre-implementation data informing where we are, we created a steering committee and we’re about to roll in patients to be involved,” said Brown. “We wanted to really spend a good year working through what this would look like in this specific clinic and how to do it safely, so that we have strong attention to potential power differentials among staff and how it could affect patient involvement. We wanted to make sure everyone’s voices are heard and that there’s no default to the academic.”
Brown and her partners at the clinic will continue sharing their interventions with patients and personnel for iterative feedback, making any amendments necessary before putting them into practice. The interventions will include trauma-informed HIV care trainings and strategies for personnel, including Stanford Medicine’s Presence 5 for Racial Justice Project.
To evaluate the effectiveness of the interventions, Brown and clinic personnel will measure changes in attitudes among personnel, along with the overall clinic culture around organizational trauma resilience (OTR) through the OTR Assessment (for personnel) and the OTR Assessment-PREM (for patients). They will simultaneously track missed and kept appointments to identify any improvement in patient appointment adherence, and track PTSD rates before and after patients receive a trauma assessment. When indicated, personnel will provide patients with PTSD an intervention and/or referral for further care, and track rates of PTSD before and after the additional care. Finally, Brown and clinic personnel will use the Plan, Do, Study, Act method—a four-part guide that tests implemented changes—to assess if the interventions are leading to desired changes, or if further revisions are required.
“The purpose of this is really to help personnel and providers gain the skills and confidence to enhance humanistic communication and reduce the possibility of microaggressions in clinical care spaces,” Brown said. “We hope to help clinic personnel prepare for this adoption of trauma-informed care, so that by the time we launch into fully screening and assessing every patient for trauma, the reaction is not, ‘What do we do?’ Instead, we’ll be fully prepared as a clinic to respond to identified trauma.”
Extending the Impact beyond Shelby County
Brown’s metric of success is not just focused on the findings she can share with the scientific community, but also how she’s able to disseminate the intervention to other communities.
With support from the Southeast AIDS Education and Training Center, Brown will launch the trauma-informed approach to HIV care as a free training series throughout a ten-state region, taking the form of a series of ten-minute videos.
“I don’t want to create any other burdens or barriers for other people who want to do this. We’re going to launch this intervention so that anyone can use it, and my hope is that people will,” Brown said.
Brown also hopes to get more researchers to use trauma-informed research strategies. She is currently working to develop a three-year study throughout most southern EHE priority jurisdictions to look at how researchers can best engage community members and research beneficiaries in ways that are safe, stable, and nurturing. Her goal is to develop community-led solutions to help end the HIV epidemic, while making progress towards ensuring research practices and activities that engage communities affected by HIV are empowering and do not further traumatize groups that already experience a high trauma burden.
For researchers and clinics that are interested in trauma-informed HIV care but don’t know how to apply it, Brown recommends they start by connecting with their community to develop and produce community-led solutions.
“Just because you haven’t used a trauma-informed approach on your last project, that doesn’t mean you can’t start now, or you can’t start in the future. It’s all about trying to really engage authentically with the community, and making sure community members and research beneficiaries are included at every stage of the research.”
If you’re interested in learning more or would like to integrate trauma-informed approaches to HIV care at your clinic, you can contact Brown at llbrown@mmc.edu.
Brown’s team of co-investigators included Megan Wilkins (St. Jude Children’s Research Hospital), Latrice Pichon (University of Memphis), April Pettit (Vanderbilt University Medical Center), and Jessica Sales (Emory University).
More on supplement projects: In support of the EHE Initiative, the NIH funded implementation science projects through its network of Centers for AIDS Research and the National Institute of Mental Health’s AIDS Research Centers. Research reported in this spotlight was supported under award number P30AI050410. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
More on the spotlight series: ISCI’s EHE Supplement Project Spotlight series does a deep dive on the research and findings from these projects, providing insight into how researchers, providers, and community members can advance health equity by scaling up HIV prevention and treatment strategies. Visit HIV.gov to learn about the EHE initiative and check out the NIH website for more information on supplement projects.
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