HIV Partner Notification and Serostatus Disclosure

1. HIV Partner Notification and Serostatus Disclosure Jesse Clark, MD, MSc UCLA Geffen School of Medicine Department of Medicine, Division of Infectious Diseases and Center for World Health

2. Notification and Disclosure • Partner Notification • Informing recent sexual partners of a new HIV diagnosis • Series of single events conducted during immediate post-diagnosis period when an individual is adjusting to their new HIV-positive identity • Serostatus Disclosure • Discussing HIV serostatus with new sexual partners • Pattern of long-term behavior encountered throughout lifetime

3. Why Is Notification/Disclosure Important? • Partner Notification • Important for identifying new cases of undiagnosed HIV infection • Targets case-finding efforts to sexual networks at high risk for HIV/STI transmission • Promotes early diagnosis and entry into care for HIV-positive partners • Disclosure • Important for prevention of HIV transmission within sexual partnerships • Open discussion of HIV status (positive or negative) allows acknowledgement of potential risks for HIV/STIs and mutually determined strategies to reduce risk • Harm reduction strategies (serosorting, seropositioning) dependent on open, accurate disclosure of HIV status

4. Stigma and Disclosure • Stigma: “An attribute that is deeply discrediting” • “Discredited” vs. “Discreditable” and “Passing” • Cultural meanings of medical facts • “I burnt my lip” • “I have a cold sore” • “I have herpes” • “I have primary syphilis” • Social implications of HIV dx • HIV=Gay/MSM/IDU • Infidelity/Promiscuity • Moral turpitude vs. “Innocent victim”

5. Effects of Stigma • Causes harm to HIV+ individuals and their families • Discrimination and harassment • Efforts to hide dx lead to problems accessing and maintaining HIV care • Emotional pain and stress • Inhibits open discussion of HIV/AIDS • Decreased rates of HIV testing • Decreased discussion of HIV status between partners • Inhibits condom use (in settings where unprotected intercourse is norm)

6. Addressing Stigma as a Social Problem • Stigma is a self-perpetuating cycle • Stigma inhibits disclosure; Non-disclosure promotes social isolation of people with HIV; Lack of public recognition maintains perception of HIV as something hidden, shameful, and other; (Silence=Death) • Open discussion of HIV/AIDS as a routine problem • End of “AIDS Exceptionalism” • Attention to contributing factors including social marginalization, homophobia, discrimination • Collective empowerment of people living with HIV

7. Notification and Disclosure Decisions • Petronio’s “Communication Privacy Management” (CPM) Theory • Individuals define and negotiate individual and interpersonal boundaries for disclosure or concealment of “private” information • Decisions about disclosure based on combination of factors including context (social, cultural, and gender), motivation, and risk-benefit calculations • Disclosing to another person implicates them in defining and maintaining boundaries of privacy (“Boundary Coordination”)

8. Incentives to Partner Notification/Disclosure To protect the health of partner To maintain trust/honesty within partnership To obtain social or emotional support from partner To obtain financial support from partner To protect the health of the community (“break the chain of transmission”)

9. Barriers to Partner Notification/Disclosure • Low perceived importance of notification/disclosure • Unsupported assumptions about partner HIV status • Fear • Personal • Shame, rejection, abandonment • Violence • Social • Public disclosure of private information • Stigma and discrimination • Lack of contact information • No contact information (anonymous partner) • Limited contact information (e.g., screen name or email address only)

10. Partnership Contexts of Notification and Disclosure • Partnership characteristics important in decisions related to notification and disclosure • Partner gender/sexual identity • Partnership type • Length of partnership • Trust and commitment within partnership • Perceived monogamy/infidelity • Perceived source of infection and/or perceived likelihood of transmission to partner

11. Partner-Specific Strategies for Notification/Disclosure • Partnership characteristics also define how HIV is or is not discussed with the partner • Stable Partners • Face-to-Face notification/disclosure common • Disclosure often in context of established, committed relationship • Casual Partners • Notification less common, more often through indirect methods (provider notification, anonymous internet systems) • Disclosure highly dependent on social norms • Commercial Partners • Notification and disclosure rare due to potential loss of income • Anonymous Partners • Unable to be notified; Disclosure dependent on social norms and method of contact (e.g., internet profile may specify individual’s HIV status prior to any contact)

12. Tools to Support Partner Notification • Post-Test Counseling • Emphasize importance of notification and disclosure • Develop specific strategies for notification of recent partners • Role-play notification and/or disclosure scenarios • Referral Cards • Printed information on HIV/STI for patient to deliver to partner • Provides a practical tool to support face-to-face notification • May include “Fast-Track” clinic referral • Internet/SMS-Based Notification • Potential for disclosure of HIV status in profile • Allows notification of partners with limited contact information • Anonymous notification • Provides links to education/testing resources in notification message

13. Partner Notification Counseling Intervention at a critical point in the individual’s decision-making process Potential to emphasize importance of notification, develop partner-specific notification decisions and strategies, and address potential barriers to notification Provides a bridge to future serostatus disclosure practices

14. Partner Notification Counseling: Do’s and Don’ts • DO: • Emphasize the primacy of the individual, their needs, and their safety while also stating the importance of notification for themselves and their partners • Discuss general attitudes or perceptions about notification before discussing partner-specific decisions • Outline recent sexual partnerships and use these as a structure to guide notification decisions • Develop a specific strategy for how each named partner will (or will not) be notified (Face to face, internet, SMS, Provider, etc.) • Identify potential barriers to notification of each partner • Role-play notification process (with and without complications) to help “embody” the experience

15. DON’T: • Treat the person like they have done something wrong and need to compensate for their mistakes • Ignore the fact that this person has just received information that could profoundly change their life • Ignore the importance of the individual’s autonomy in making partner notification decisions • Ignore the importance of their safety and well-being in making notification decisions

16. Serostatus Disclosure Counseling Continuation of initial partner notification counseling interaction Concept introduced during partner notification counseling and then developed during subsequent interactions Emphasizes disclosure as a lifelong series of context-specific decisions and individual interactions Uses longitudinal experiences as a framework to structure discussions about serostatus disclosure Addresses disclosure as one component of a comprehensive HIV/STI prevention plan

17. Role-Playing Scenarios Patrick, a 31 year old gay male, has just been diagnosed with HIV infection and is discussing with the counselor whether/how to tell his recent partner(s) Jane, a 24 year old heterosexual female, has just been diagnosed with HIV infection and is discussing with the counselor whether/how to tell her husband Jose, a 19 year old bisexual male, is discussing with his physician whether/how to discuss his HIV-positive serostatus with his sexual partner(s)