HIV clinic-based audio project emphasizes the power of patient voices

The voice on the recording was low and calm as the speaker recounted the telephone call that brought the news he was infected with the human immunodeficiency virus (HIV) that causes AIDS: "My heart just stopped for a little bit and next thing you know I was on the floor flat on my face boohooing, crying like a baby."

Yet the message was hopeful when the recording ended less than 10 minutes later. "Don't feel like this is the end of you . . . because it is just God setting you up for something greater," the anonymous speaker tells an unseen audience.

The St. Jude Children's Research Hospital VOICES project that captured the patient's voice and story is the focus of the "A Piece of My Mind" column in the July 22 edition of the Journal of the American Medical Association (JAMA). The project uses contemporary technology to tap an ancient and powerful clinical tool—the patient's own story—as a way to empower and inspire patients, teach empathy and improve .

VOICES began in 2012 as a way for HIV-infected St. Jude patients, ages 18 to 24, to anonymously share the experience of being HIV positive with other patients, health care providers and students. Today, this password-protected archive includes recordings from 18 patients recounting the stories they wanted to tell—the shock of diagnosis, the importance of medication adherence and a healthy lifestyle, the social stigma of HIV or their refusal to let the diagnosis limit their dreams or define who they are.

"This project has confirmed our belief in the power of patient voices and patient stories," said corresponding author Aditya Gaur, M.D., an associate member of the St. Jude Department of Infectious Diseases. The narratives have empowered participants and have given another tool for helping patients struggling with issues like . The project has also given clinicians and students a glimpse into the emotional impact of HIV, allowing them to learn the challenges patients face in navigating the health care system or to receive feedback on the clinical environment.

"This project provides another layer of understanding that is not available to every clinician or student, particularly in today's medical environment when there is often limited time to build rapport with patients and students often receive information about patients second hand through the medical records or other members of the health care team," Gaur said. Kathryn Cantrell, formerly of St. Jude and now of the University of Massachusetts, Boston, is the first author and Sylvia Sutton, a St. Jude social worker, is co-author of the essay.

St. Jude has been involved in HIV and AIDS research and treatment since 1987. Today the hospital's multidisciplinary HIV/AIDS program cares for more than 275 HIV-infected children and youth. The VOICES project is currently limited to youth, who are approached about possible participation by a member of their health care team. The recordings average about five minutes in length and occur after patients provide written consent. The patient determines the content.

The resulting audio files are stripped of patient identification, catalogued by themes like disclosure, coping and relationships, and transcribed to make it easier for clinicians to access the library to help other patients with similar concerns.

The recordings underscore the importance of listening to patients, Gaur said. "If you really want to know a patient," he said, "you have to listen."

add to favorites email to friend print save as pdf

Related Stories

Aging with HIV and AIDS: A growing social issue

Jun 25, 2014

As the first people with HIV grow old, a new study from St. Michael's Hospital questions whether the health care system and other government policies are prepared to meet their complex medical and social needs.

Recommended for you

New study reveals why some people may be immune to HIV-1

Nov 20, 2014

Doctors have long been mystified as to why HIV-1 rapidly sickens some individuals, while in others the virus has difficulties gaining a foothold. Now, a study of genetic variation in HIV-1 and in the cells ...

Virus discovery could impact HIV drug research

Nov 20, 2014

A research team led by Portland State University (PSU) biology professor Ken Stedman has unlocked the structure of an unusual virus that lives in volcanic hot springs. The discovery could pave the way for better drugs to ...

UN warns over threat of AIDS rebound

Nov 19, 2014

South African actress Charlize Theron threw her weight Tuesday behind an urgent new UN campaign to end AIDS as a global health threat by 2030.

User comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.