Breaking Through the Silence: The Experience of Living With HIV-Positive Serostatus, and Its Implications on Disclosure

Abstract

AIDS has reached pandemic proportions and despite advances in medical treatment both the medical and social consequences of HIV-positive serostatus continue to be of concern throughout the world. In countries with greater access to antiretroviral therapy (ARV), HIV/AIDS it is no longer defined as fatal, but rather a chronic disease, thereby this study seeks to understand the experience of individuals living with HIV-positive serostatus, a multifaceted disease, from the time the infection is diagnosed through the four post-diagnosis years, and in particular its implications on the issue of disclosure. A qualitative analysis was conducted, based on 13 in-depth interviews with participants who are HIV-positive and the data was analyzed by inductive content analysis. The results identify six themes, four central elements that compose the experience of living with HIV: the emotional experience, the stigma attached to HIV, the inner dialogue, and disclosure. A three-phase coping process and personality differences were found, all of which will be discussed. The issue of disclosure was found to be cardinal and problematic in its impact on the patient's wellbeing.

Keywords:

• HIV/AIDS
• emotional distress
• coping
• disclosure
• stigma

Acknowledgments

The authors wish to thank the participants who contributed to the study by sharing their experiences and making their voices heard despite the difficulties related to disclosure. The authors would also like to thank Michal Ben-Dor for her assistance throughout this study. Her valuable input is much appreciated. The study was granted by the Sara Peleg Fund from the Bob Shapell School of Social Work at Tel Aviv University.