The Pediatric HIV/AIDS Cohort Study (PHACS) is a longitudinal cohort study investigating the long-term effects of HIV infection and ARV (antiretroviral) medications in children and young adults who were born with HIV or born exposed to HIV. The study follows newborns, young children, adolescents, and young adults. One part of the study is discussed in the presentation “Comics as an Exploration of Spaces Connected to HIV to Facilitate Maternal Disclosure.” Researcher Claire Berman presented this study, and the comics related to it, at our 2015 conference in Riverside, California and on a Health Comics panel at San Diego ComicCon. On this episode we will discuss this comic and the process that lead to its creation.
My guests on this episode are Claire Berman – director of health education and communication for PHACS based at Harvard T. H. Chan School of Public Health, presented on the Comics & Health panel at Comic-Con in San Diego and at the 2015 Comics & Medicine conference in Riverside, California, Lauren Lee – artist of the comics used in the program, and Leslie P. – Vice Chair of our Community Advisory Board (CAB) for this project
Project background: In the U.S., the majority (76%) of women with HIV/AIDS have a child under the age of 18,and disclosure of their HIV status to their child is one of the top three concerns cited by mothers living with HIV. Yet the rate of maternal disclosure is low, with a median rate of 41%. Maternal disclosure is often a challenging and complex process over time, and may be accompanied by a range of dynamic emotions and reactions unique to each family. Mothers often lack culturally relevant resources around disclosure of their own status. This project engages Community Advisory Board (CAB) members, caregivers, study participants, clinical staff, and health educators from around the U.S. infacilitated dialogues, story circles, interviews, and focus groups to develop culturally relevant disclosure resources for HIV-positive caregivers and their children. The resulting two comics – “What is HIV?” and “Living with HIV” – and accompanying caregiver guide are an exploration of spaces connected to HIV, including the virus itself, the body, the family and home, medical clinics, and antiretroviral treatments. The non-stigmatizing exploration of these spaces aims to, in turn, create a healthy, affirming, and empowering conversational space for HIV-positive caregivers and their children, where beginning a process of maternal disclosure and a discussion of HIV and stigma is possible.
The Comics can be seen, downloaded, and you can read more information here: https://phacsstudy.org/Education-Hub/HIV-Disclosure-Comics.
This podcast is sponsored by the Department of Humanities at Penn State Hershey College of Medicine. For more information, go to http://www2.med.psu.edu/humanities/