With studies showing that African Americans living with HIV disproportionately struggle to remain in care and maintain suppressed HIV RNA levels, a team of public health researchers will look for solutions in a new way: They will systematically and rigorously identify the resources that successful patients draw upon to overcome the pervasive pitfalls that hinder others.
The ability of some HIV patients to succeed in management of their HIV despite the considerable adversity they face is reflective of a concept called "resilience." With a new $3 million, five-year grant from the National Institutes of Health, a research team led by Brown University School of Public Health assistant professors Chanelle Howe and Akilah Dulin Keita intend to turn the concept into a novel, validated public health measure that may better reflect the experiences of HIV patients and inform new kinds of intervention.
The collaboration includes colleagues at Brown, the Miriam Hospital, the University of Miami, the University of Delaware, the University of Alabama at Birmingham (UAB) and the University of North Carolina at Chapel Hill (UNC). The team met at Brown for the first time on Sept. 22.
After the team develops a new resilience measure, they will test it to determine whether resilience is independently associated with outcomes such as treatment "adherence" and HIV viral load. Antiretroviral drugs can successfully suppress HIV in most patients, but only if they remain in care and take the medicines consistently. That can prove difficult for some people coping with poverty, living or working in neighborhoods with high crime or inadequate transportation options, or living with family members and friends who regard HIV with a forbidding degree of stigma.
"A lot of research has focused on individual level behaviors and risk reduction to try to get people to be engaged in care and adherent to their medications," Howe said. "Despite this research, disparities have persisted and are pretty considerable. Meanwhile, intervening to improve someone's neighborhood is a pretty high bar. But resilience is about thriving despite adversity."
If resilience can be identified, measured and shown to be a significant factor in HIV outcomes, Dulin Keita said, then researchers may be able to design ways to help increase resilience among patients.
"Our long-term goal is to develop resilience-building interventions if we find support for our study hypothesis," Dulin Keita said. "The goal is to increase the proportion of people living with HIV with a suppressed HIV viral load."
From interviews to interventions
To develop the measure, the team will interview patients about individual, interpersonal and neighborhood sources of resilience in their lives. Such a direct, systematic dialogue between researchers and African American patients regarding resilience has been notably absent in prior studies, leaving a significant gap, Dulin Keita said.
The research will focus on patients at HIV clinics run by UNC and UAB, where team members have already been collaborating on other studies, including to document the degrees of success and also disparities that clinic populations experience.
For the project's first phase, the researchers will interview a select subset of patients who have at least a 75 percent attendance rate at scheduled appointments and have not had two or more consecutive detectable viral loads in the past two years. Out of all the interviews, the researchers will distill the perspectives they gain on sources of resilience at the individual, interpersonal and neighborhood levels that might reveal potential components of a new resilience measure. These might include, for example, family support and problem-solving, understanding employers, or safe, effective public transit.
In the second phase of the project, the team will work to conduct a "psychometric" validation of the measure to narrow down the findings to create a specific, reliable and valid instrument. To do this, researchers will apply the candidate measure with a larger group of participants to ensure it fits well with their independent experience.
Once the team has arrived at a validated measure, they will recruit yet another and larger cohort of patients from each clinic to conduct a study examining whether resilience based on the validated measure is associated with successful outcomes, controlling for potential confounding factors.
The study will also look at how resilience interacts with specific protective or risk factors. The researchers can ask whether having a supportive family, for instance, is especially helpful for overcoming stigma-related issues.