Managing HIV Care in Real Time
Our Researcher: Veronica Njie-Carr, PhD, RN, ACNS-BC, FWACN
By Dan Mezibov
Since their debut a decade ago, smartphones have offered users more than just a few new conveniences. For many patients with chronic illnesses, the technology is providing an innovative array of tools to help better manage their care.
But few smartphone interventions have been the product of randomized controlled trials that are the gold standard for research, and rarer still are studies using smartphones to improve the health of older adults.
After her recent review of smartphone studies targeting the care of patients with HIV/AIDS, University of Maryland School of Nursing Associate Professor Veronica Njie-Carr, PhD, RN, ACNS-BC, FWACN, found none related to aging women and HIV.
“I care about eliminating health disparities by working with women of African heritage who are aging with HIV,” says Njie-Carr about her study “A Self-Management Technology-Enhanced CARE Intervention to Improve HIV Health Status and Quality of Life.” Working with 16 HIV-positive women over the age of 50 who are of African descent, Njie-Carr is leveraging smartphones and web-based technologies to help these patients manage their HIV symptoms, stay motivated to remain in treatment, and engage in social supports that are critical to optimal daily functioning.
The population Njie-Carr is working with experiences the highest rate—42 percent—of people infected with HIV, Njie-Carr explains. Moreover, because HIV treatment has generated longer life expectancies—from 55 years in the 1990s to beyond 70 currently—nearly half of people living with HIV are aged 50 and older. As a result, “we now must address the long-term effects of living with HIV and treat the disease as a manageable chronic illness,” Njie-Carr says.
HIV care is challenged by a mix of chronic conditions among older adults—including frailty, fatigue, cardiovascular and kidney disease, diabetes, arthritis, and neurological and cognitive declines—that often occurs alongside HIV and interferes with daily treatment and the ability to perform daily life functions. Of critical concern, too, is the inability of many HIV patients to remain in regular care after they are diagnosed because of limited access, low income, poor social supports, and limited knowledge of the disease.
“My overall goal,” Njie-Carr says, “is to develop a replicable, culturally relevant intervention to empower women of African descent with the tools, support, and information they need to age well with HIV.”
With $12,000 of initial funding from a two-year UMSON Dean’s Research Scholar Award, the study will employ written content, customized videos, virtual chat rooms, and synchronized group sessions that can be accessed using an app or online. The effort has completed its first phase by assembling focus groups and a 10-member Community Advisory Board of stakeholders, including Baltimore metro-area patients, clinicians, researchers, and technology experts who are informing all aspects of the study’s content. After using the intervention at their own pace for three weeks and providing feedback to optimize it, participants will be compared to a control group that does not receive the intervention but instead engages in weekly telephone support about health status and progress.
Designed as a supplement to the regular care patients receive from their providers, the study aims not only to prevent transmission and promote health, but also to help patients monitor their moods and progress, as well as link them to clinician support and other community resources. Spirituality is a key strength in women of African heritage, Njie-Carr says, pointing out that tips and tools for self-reflection and maintaining a positive mood will be among the intervention’s features.
“We’re helping these women manage their care, on their own, with more autonomy as they go about their daily lives,” Njie-Carr says. “And I think that’s powerful.”