The influence of perceptions of HIV infection, care, and identity on care entry

Abstract

The benefits of accessing HIV care after diagnosis (e.g., improved clinical outcomes and reduced transmission) are well established. However, many persons who are aware that they are HIV infected have never received HIV medical care. During 2008–2010, we conducted 43 in-depth interviews in three health department jurisdictions among adults who had received an HIV diagnosis but who had never accessed HIV medical care. Respondents were selected from the HIV/AIDS Reporting System, a population-based surveillance system. We explored how respondents perceived HIV infection and HIV medical care. Most respondents associated HIV with death. Many respondents said that HIV medical care was not necessary until one is sick. Further, we explored how these perceptions may have conflicted with one's identity and thus served as barriers to timely care entry. Most respondents perceived themselves as healthy. All respondents acknowledged their HIV serostatus, but many did not self-identify as HIV-positive. Several respondents expressed that they were not ready to receive HIV care immediately but felt that they would eventually attempt to access care. Some stated that they needed time to accept their HIV diagnosis before entering care. To improve timely linkage to care, we suggest that during the posttest counseling session and subsequent linkage-to-care activities, counselors and service providers discuss patient perceptions of HIV, particularly to address beliefs that HIV infection is a “death sentence” or that HIV care is necessary only for those who exhibit symptoms.

Keywords:

• HIV infection
• health care accessibility
• self-concept
• qualitative research
• Centers for Disease Control and Prevention

Acknowledgements

We thank the respondents who helped us better understand the challenges of accessing HIV medical care. The Never is Care Project includes Mike Connor, Indiana State Department of Health, Indianapolis, IN; Gia Badolato, MPH, Michael Eberhart, MPH, Mark Shpaner, MD, Philadelphia Department of Public Health, Philadelphia, PA; Afework Wogayehu, MPH, Barbara Bolden, PhD, New Jersey Department of Health and Senior Services, Trenton, NJ; Alan Neaigus, MD, Sam Jenness, MPH, New York City Department of Health and Mental Hygiene, New York City, NY; Susan Buskin, PhD, James Kent, MS, Leslie Pringle, Washington Seattle & King County Department of Public Health, Seattle, WA; Mark Stenger, MA, Washington State Department of Health, Olympia, WA; and members of the NIC team, Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, GA. The findings and conclusions in this article are those of the authors and do not necessarily represent the views of the CDC.