The St. Jude Voices project enables patients with HIV to share their feelings with fellow patients, educate their clinicians and give back to the hospital.
For a teenager or young adult diagnosed with human immunodeficiency virus (HIV), the experience can be overwhelming, confusing, life changing. The words “HIV positive” can profoundly affect relationships with friends and family. At St. Jude Children’s Research Hospital, a program enables patients to share their deepest, most profound feelings in a venue that protects their identity.
According to Aditya Gaur, MD, of St. Jude Infectious Diseases, teens and young adults ages 13 to 24 account for approximately one in four new HIV infections in the United States. According to the World Health Organization, there were approximately 35 million people worldwide living with HIV/AIDS in 2013. Of these, 3.2 million were children (less than 15 years old).
Shortly after St. Jude founder Danny Thomas’ 1987 proclamation that HIV/AIDS should be part of the St. Jude mission, the hospital established a pediatric HIV/AIDS clinical program. Today, more than 250 patients are part of that program.
In fall 2012, staff in St. Jude Child Life, Social Work and Infectious Diseases departments started the Voices project—an opportunity for HIV-infected patients to share their experiences, fears, hopes and advice through private audio recordings.
The project provides a therapeutic coping experience for patients. Participants obtain greater control of their illness experience by conceptualizing it.
“HIV patients aren’t often provided with that control—that outlet to construct their illness experience—because they want so deeply to remain anonymous and hidden for the fear of stigma and judgment,” says Kathryn Cantrell, who spearheaded the project as part of the St. Jude Child Life program.
Twenty-four St. Jude patients, ages 18 and older, have shared their stories so far.
“During the experience, they may relive the day that they were diagnosed and how they came through it, evaluate where they are at this point and discuss where they want to go,” says Sylvia Sutton of St. Jude Social Work.
St. Jude patients say Voices enables them to give back to St. Jude. They can offer advice to other patients and to clinicians while retaining their privacy.
Narratives are coded, transcribed, digitally archived and used by members of the HIV health care team for patient and staff education.
By listening to the recordings, clinicians can assess how they communicate with patients, how patients communicate with them and how that promotes patient health. The recordings provide the St. Jude HIV team a powerful tool to educate students and other health care providers about HIV and humanize the impact of the disease.
Abridged from Promise, Autumn 2013
[Some information edited in 2015.]