Trauma-informed care; the intersectionality of HIV, gender, and poverty; and the call to embrace People First Language were among the key takeaways for clinicians and care providers at this year’s 7th Annual Rural HIV Research and Training Conference returning to host city Savannah, Georgia.
Healthcare can be overwhelming for anyone but for individuals living with HIV in rural communities, the added frustrations can result in not connecting to, or falling out of, care.
Linkage and retention are essential to Fayth M. Parks, PhD, who founded and first organized the conference seven years ago in memory of her late brother. Since then it has brought together some of the brightest and most passionate voices in HIV care. “You’d be hard pressed to find a more dedicated group of scholars and practitioners who share an authentic commitment to ending HIV in the American South,” said Parks.
“Disrupting stigma and discrimination is tough,” she added. “Grassroots effort is essential. We must empower people at the community level; be it local healthcare providers, activists, advocates, allies, [or] people living with HIV (PLWH). As a psychologist, I believe that behavioral changes are and will remain an effective means for preventing the spread of the virus, and the diverse social impact on PLWH and their caregivers are all areas in which organized psychology must maintain a leadership role.”
While working on her doctorate degree at the University of Illinois at Urbana-Champaign in 1989, Dr. Parks got an urgent call to come to Atlantic City; her older brother Ben had been hospitalized.
“During the long Amtrak train ride from Illinois to New Jersey, I had no idea that Ben was dying,” she recounted. “At the local hospital, a few family members were gathered in the waiting room. The doctor explained my brother was seriously ill with pneumonia. He made no mention of immunosuppression because Ben’s CD4-positive T cell levels were less than 200, therefore life threatening. He made no mention of the brain disease resembling Alzheimer’s slowly destroying my brother’s brilliant, creative mind. There was no mention of the AIDS virus, though I recall his hospital room was quarantined. The doctor asked me some personal questions about Ben’s lifestyle. His questions seemed personal and oddly intrusive. I was uncomfortable. I wanted to protect my brother’s privacy. Regrettably, Ben passed away a few days later. I felt confused, angry, and sad about Ben’s death and the doctor’s questions.”
From left: Mindi Spencer, PhD, associate professor, University of South Carolina. Stacy Smallwood, PhD, MPH, assistant professor of Community Health at Georgia Southern University. Fayth Parks with Betsy E. Smith, PhD, MPH, one of the recipients of the 2019 Rural HIV innovation Award.
After returning to Illinois to continue working on her degree, Parks was devastated about her only brother’s passing but was resolved to moving forward with her life. It was during that time, in 1997, that the Champaign-Urbana Public Health District was looking for volunteers to join the African American HIV/AIDS Awareness Project for help with outreach activities, risk prevention/support services, and media/public relations. Dr. Parks joined the organization.
As a steering committee member, Dr. Parks contributed to such initiatives as an annual GospelFest (promoting AIDS advocacy in African American churches) and an initiative called Taking the Message to the Streets.
“On a Saturday morning during early spring, we walked the community’s African American neighborhoods door to door to share information on HIV/AIDS and distribute condoms. At the time, African Americans made up 42% of all AIDS cases in Illinois with rates 15 times higher for African American women than for white women. So, I made a commitment to continue working on HIV/AIDS issues whenever possible. Sadly, over 30 years later, though there’s progress, we’re still fighting the epidemic.”
Cherie D. Mitchell, MHS, Director of HIV/AIDS Programs of the Health Disparities Office at the American Psychological Association, returned for her second year, because the conference brings together diverse professionals to discuss unique challenges and innovative strategies across the lifespan when addressing HIV/AIDS in rural communities.
“We know the South accounts for more than half of new HIV diagnoses with many of these in rural areas, and people living with HIV experience disproportionately high rates of trauma and stress-related disorders,” she said. “Trauma, stemming from [situations like] Intimate Partner Violence can be both a risk factor for HIV and a consequence which decreases overall health and engagement in care. Trauma-informed care is key if we are going to address HIV across the care continuum and mental and behavioral health issues.”
Mitchell pointed out that addressing disproportionately high levels of exposure to traumatic events and the resulting negative health and behavioral outcomes was a headlining topic of the conference.
From left: Queen Hatcher-Johnson; Sally Jue, MSW; Warren A. O'Meara-Dates; Marcus D. McPherson; and Sande Bailey-Gwinn.
Mindi Spencer, PhD, an associate professor at the University of South Carolina, reported on the opioid crisis in the South. “Now that we know about the intersection of HIV and the opioid epidemic, we have an opportunity to actually predict the communities which are at greatest risk for new cases of HIV,” she said. “With this information, we can mobilize our public health efforts to better serve those communities and prevent future outbreaks. Just imagine if we could travel back in time and do the same thing in the 1980s and ’90s.”
Representing the Georgia Department of Public Health’s Division of Health Protection/IDI-HIV was its medical advisor, Dr. Gregory S. Felzien, MD, AAHIVS, discussing “Getting to Zero.” Citing CDC data from 2017, Felzien reported that, “in the South, 23% of new HIV diagnoses are in suburban and rural areas … thus with 23% of new HIV diagnoses occurring outside urban centers, active participation from all communities is required whether they be urban, suburban or rural in order to remain diligent in providing high quality, accessible care, i.e. screening, treatment, prevention, etc., for patients in every community within Georgia. Equal access is vital to achieve the goal of reducing the number of new HIV diagnoses. The Rural HIV Research & Training Conference serves as an important platform for rural providers to come together to openly discuss real-world challenges and understand what is needed to provide accessible and current patient care.”
‘When I think about what motivates me to do this work, I think about all the people who are rendered invisible, their stories unheard, because of the pervasiveness of HIV stigma.’
Shifting between storytelling, the reporting of scientific data, oral care, IV substance abuse, and behavioral and mental health, the attendees were informed and updated on bedside manner. Providers’ approach, if not genuine, can easily turn a patient away and language can not only be misunderstood but it can also be offensive and prejudicial, thus impeding the split-second window for patient-provider engagement.
Queen Hatcher-Johnson, a married woman of transgender experience offered an anecdotal tip that was simple and relatable. “There is no need for pronouns, just simply using a person’s name is the best way to communicate with humans. Pronouns are interchangeable with identity.”
Joining Hatcher-Johnson on the panel were fellow community leaders Warren A. O’Meara-Dates, BA, CPAT, Executive Producer, Start Talking Alabama and Special Projects Coordinator, HIV/AIDS Division, ADPH; Sande Bailey-Gwinn, Founder of Foundations for Living; and Marcus D. McPherson, MPPA.
People First Language places individuals as it literally states—the person first and the disability or disease second. Thus, it is “people living with HIV,” not “HIV-positive people.” Using People First Language is a key component of efforts to reduce stigma and discrimination.
“Doing this [HIV] work should be about respecting the person who comes into your office, clinic, or wherever you do this work,” said McPherson. “This individual is someone who is trusting you to treat them as a fellow human being, not as a patient, not a consumer… If you can look someone in their eye and see them as a person and can connect with them in that manner, you can then be able to provide quality care to that person.”
The AIDS Institute (TAI) co-hosted the conference, collaborating with the Georgia Department of Public Health and Georgia Southern University’s College of Education.
“As a person living with HIV, it’s an amazing experience to work with many of my peers and care providers and researchers to curate a conference that holistically addresses HIV in the rural South,” said TAI research coordinator Sean McIntosh, MPH, CPH, who is also an administrator at the Florida Consortium for HIV/AIDS Research.
The closing keynote address was given by Jeanne White-Ginder, who recalled memories of her son—Ryan White—and his battle to overcome stigma, fighting for his right to go to public school in Indiana.
Balancing perspectives from both sides of care, presenter Dr. Stacy W. Smallwood, PhD, MPH, Associate Professor, Jiann-Ping Hsu College of Public Health at Georgia Southern University, shared with both charisma and compassion.
“When I think about what motivates me to do this work, I think about all the people who are rendered invisible, their stories unheard, because of the pervasiveness of HIV stigma. [It’s] important to lift up the experiences of HIV in rural areas, as well as the people who work so hard to prevent new infections, treat those who have been diagnosed, and promote critical conversations in our communities. Until we are able to center the experiences of the most marginalized, we will never be able to make the impact that we seek."