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, the use of a comic for maternal disclosure of HIV status, is discussed in this podcast. 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.
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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 2016 in San Diego and at the 2015 Comics & Medicine conference in Riverside, California
- Lauren Lee – artist of the comics used in the program, and
- Lesley P. – Vice Chair of the Community Advisory Board (CAB) for PHACS
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 may be 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. Each caregiver’s situation is unique, and while disclosure may be the right choice for some, it may not be right for everyone. Caregivers told us they lack culturally relevant resources to help them explore their own disclosure decisions and to initiate conversation s about HIV with their children. This project engaged Community Advisory Board (CAB) members, caregivers, study participants, clinical staff, and health educators from around the U.S. in facilitated 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 choosing to begin 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
Next up on the podcast: an interview with Carlo Jose San Juan, MD, creator of Callous 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/