UCSF

Background: In the United States, women living with HIV/AIDS (WLWHA) face high rates of morbidity and mortality despite the existence of effective antiretroviral therapy. A San Francisco–based arts organization, Cultural Odyssey, in collaboration with the Women’s HIV Program at UCSF, adapted a performance–based empowerment group intervention to include WLWHA. Participants translated personal experiences related to HIV into vignettes that were performed during a theatrical run of eight shows entitled Dancing with the Clown of Love (DCL), which was seen by approximately 1,000 people. The purpose of this study is to describe the impact of the group intervention on WLWHA and compare these findings to the Disclosure Process Model (DPM), a relatively new framework for understanding the process and impact of HIV–disclosure.

Methods: In–depth interviews with HIV–positive participants (n=8) were conducted between May and December 2011. A multidisciplinary team transcribed and analyzed data using thematic analysis. All transcripts were double coded.

Findings: Participants were primarily African American (62.5%), with the mean age of 48 (range 23–65), and all had earned a high school diploma. All HIV–positive participants disclosed their HIV–status during the performance. Core themes about the impact of the intervention emerged from the data, including: forming relationships, decreasing isolation, normalizing HIV, providing a sense of purpose, and personal transformation. The concept of personal transformation was further analyzed and major sub–themes included: gaining a voice, exploring self–identity, catharsis, gaining a sense of accomplishment, and developing self–esteem. The DPM provides a conceptual framework for understanding the impact of this theatrical performance group on WLWHA and several themes were predicted by the model. Additionally, descriptions of disclosure from this study add depth and complexity to the model.

Conclusions: WLWHA are often marginalized and isolated because of continuing HIV–stigma. Women who participated in DCL and publicly disclosed their status reported achieving many aspects of personal empowerment, such as decreased isolation. By participating in a performance group, women found their voice and learned to value their experiences. The findings of this study show that interventions utilizing components from the DPM can have a significant positive impact on the lives of WLWHA.