Improving health through film for patients with HIV and histories of trauma
Leonard is trying to manage HIV treatments while living on the streets, a challenge compounded by childhood trauma, drug use in adolescence and strained family relationships. To make matters worse, he’s trying to overcome these personal hurdles at the height of the pandemic and the rising movement against police violence.
Leonard is one of three main characters in an educational health narrative film called “TRY” (an acronym for Translating Research for You), which explores how unresolved traumas materialize and impact all areas of a person’s life. The film is set to premiere at the International Black and Diversity Film Festival in Toronto this June.
“TRY” aims to explain health research to communities that may lack health promotion resources, which would help lead to improved patient outcomes, says Megan Ebor, PhD, the film’s director and a researcher at the Center for Culture, Trauma, and Mental Health Disparities at the Semel Institute for Neuroscience and Human Behavior at UCLA.
The opportunity to develop the film came up through the center as part of an ongoing research study entitled “Healing our Hearts, Minds and Bodies,” (HHMB). Developed by Drs. Gail Wyatt, Alison Hamilton, Arleen Brown and a research team, and funded by the National Heart, Lung and Blood Institute (a Division of the National Institutes of Health), HHMB has been implemented at the OASIS Clinic at Charles Drew Medical Center, The Clinic of Dr. William King and Northeast Valley Medical Center in the San Fernando Valley.
Two goals of the five-week HHMB curricula are:
1.) to educate and support clinic staff in caring for patients dealing with several conditions that affect cardiovascular health and histories of trauma;
2.) to teach these patients problem-solving techniques, anxiety and stress reducing strategies, trauma writing exercises, and strategies to improve cardiovascular health through diet, exercise, stress reduction, smoking sessation and emotional regulation.
While developing the HHMB program, the research team saw that there was a lack of culturally congruent health education media – media that was inclusive of patients’ cultural values and experiences – available to re-enforce the health concepts being taught.
Dr. Ebor says she created “TRY” to serve as “a real-life demonstration” of how the lessons of the HHMB curricula apply to patient’s lives and can help them with their overall health.
Trauma and health
Histories of trauma, or physically, emotionally harmful or life-threatening experiences that have lasting adverse effects, are common among people living with HIV. Among Black and Latinx people living with HIV, histories of trauma are more prevalent, studies show. This may be due to the bias, discrimination and racism towards the intersectionality of race, class, disability, sexual orientation and other aspects of a person’s identity.
Dr Ebor’s inspiration for using film to translate public health content was borne out of her experience with her great-aunt’s missed diagnosis of syphilis in late age.
“The doctor kept dismissing her symptoms and it was almost like we had to fight to be heard by her provider,” Dr. Ebor says. “There were a lot of -isms in that situation, ageism, perhaps racism, and sexism.”
She says this experience made her question how other people similar to her family were contending with issues around sexuality and sexual health – particularly older women of color. Her award-winning documentary, “Even Me” aimed to dispel the myth that HIV/AIDS is a LGBTQ+ or young person’s disease and revealed the devastating impacts of the epidemic on heterosexual, older adult populations and communities of color.
“TRY” is aimed at a wide audience that includes patients, clinicians and the community, Dr. Ebor says. It reinforces health strategies introduced through HHMB for Black and Latinx people dealing with HIV, cardiovascular disease and histories of trauma, and provides health care providers – and anyone who views it – insight for holistic and effective ways to communicate with communities from diverse and sometimes marginalized backgrounds, in a culturally authentic manner.
“I wanted to capture the various levels of the lives of the folks that we work with,” Dr. Ebor says, “and wanted to show that interventions can be more meaningful and maybe lead to a more enhanced outcome, if participants in the study can see people like themselves engaging in the strategies that we teach.”
During the final week of the HHMB curriculum, all participants are shown the “TRY” film to bolster the material learned. The study has recently transitioned to an online platform, and each participant is provided a tablet and wifi to ensure accessibility in the COVID-19 era.
“We are focusing on a population that already is overburdened by health issues,” says HHMB lead investigator Gail Wyatt, PhD, clinical psychologist, Director of the Center for Culture, Trauma and Mental Health Disparities and Professor of Psychiatry and Biobehavioral Sciences at The Semel Institute for Neuroscience and Behavior at UCLA. “Their resources are very limited. Many people don't have medicine, money, jobs or cars.”
A story in motion
HHMB study participant Carlos Santiago (not his real name) spent much of his life fielding anxiety, depression and post-traumatic stress disorder. Eventually, he had a nervous breakdown that cost him his job, health insurance and doctors.
During that period, “I found out I was HIV positive and had no money,” Santiago says.
Through his own research, he found the Northeast Valley Clinic, which he says has been “pretty wonderful” in helping him navigate care. Santiago says though he still has anxiety, the clinic has helped him to manage his HIV medications, provided a stable healthcare provider that he trusts, and has given him access to behavioral health resources and health education like the HHMB curriculum.
Santiago says programs like HHMB help doctors to see “the whole picture,” because each person arrives at their care with a story in motion.
“When an individual walks into your office, you don't know if they're homeless, or if they have eaten, or if they have an income,” Santiago says. “All of those things play a role in health; it’s cyclical.”
The film follows Leonard’s journey – one similar to Santiago’s – in finding the clinic and HHMB program. Each story in the film was inspired by true events, which add a layer of depth for those who view it, Santiago says, and the actors look and sound like participants from the study.
“You don't see a lot of characters like the actors we saw in this film, in commercial, highly polished Hollywood films,” Santiago says. He said the people in the film, were “normal” to him: “Some people are poor and some are rich, some are Black and some are white.”
Capping the five-week curriculum with “TRY” felt, “symbolic to a graduation,” to Santiago.
“It was a collective experience and that was something that I haven’t felt a lot, so I really liked it,” he says.
Often by the time patients like Santiago find resources and support groups, Dr. Ebor says, the sum of the trauma they’ve endured has brought them close to a breaking point. “How can we expect people who don’t have access to mental health support or hold the skillset to resolve their trauma to sustain themselves over time?” she says.
Drs. Wyatt and Ebor are hopeful “TRY” and the HHMB program will serve as an example to other clinics and health organizations of what is possible in health promotion tools – that clinicians will learn to approach trauma-based interventions with empathy and understanding, and that patients, in identifying with the struggles and triumphs shown in the film, will be motivated to use the skills taught by HHMB throughout their lives.
“It's not just our team coming in as a temporary group of people,” Dr. Wyatt says. “We are really giving the knowledge and the skills to the people in the clinics who work there all the time, and we’ve seen how the participants respond to what we’re offering. For some, it is life changing.”