“I'm sorry, you're positive”: a qualitative study of individual experiences of testing positive for HIV

Abstract

New CDC guidelines for HIV testing as well as the introduction of rapid tests may increase the number of HIV tests conducted in the USA and make testing a more routine part of medical care. However, little is currently known about the experience of those receiving positive results. In this study, face-to-face interviews were conducted with 50 participants who had recently learned they were HIV positive in the San Francisco Bay Area. Ninety-two percent were male, 36% were persons of color. Participants were asked to tell their story of testing positive for HIV. Interviews were transcribed for team-based narrative qualitative analysis. The majority of participants were tested at either a hospital or an HIV test site. While some suspected they might have HIV, most were tested while seeking care for another health concern or for routine testing. Fifty-eight percent had a rapid test. Test results were typically given by medical staff or HIV test counselors. The manner in which the news was delivered affected an individual's testing experience. For seven (14%) of the participants, the provider giving the results was so upset or agitated that it added to the participant's distress over the diagnosis. Responses to the news varied greatly from being too shocked to comprehend what they were being told to immediately accepting the news and feeling ready for action. The patient/provider interaction plays a pivotal role in both follow-up care and prevention decisions. Therefore, HIV service providers need to be cognizant of the way in which their role in the testing process, including delivery of the news and post-test counseling impacts the individual's experience of testing positive.

Keywords:

• HIV
• testing
• diagnosis

Acknowledgements

The project described was made possible by Grant Number R01 MH068170 from the National Institute of Health (NIH). It was also supported by Grant Number UL1 RR024131 from the National Center for Research Resources (NCRR), a component of NIH, and NIH Roadmap for Medical Research, and its contents are solely the responsibility of the authors and do not necessarily represent the official view of NCRR or NIH.