This document summarizes a study on the psychosocial impacts of a new HIV diagnosis on men who have sex with men. It describes the study objectives, mixed quantitative and qualitative methods, and key findings. Participants experienced stigma, worries about disclosure to family/work, impacts on relationships, and reconciling views of HIV. They described anxieties around sex and transmission, and future optimism from treatment. The diagnosis prompted complex identity reshaping as they coped with a new HIV-positive identity.

1. “ I’m Still the Same Person”: Reshaping Identity within the Context of a New HIV Diagnosis Presentation to BCCDC Research Symposium November 16, 2010 Michael Kwag, Malcolm Steinberg, Bill Coleman, Lauren Bailey, Cory Genereaux, Michael Rekart

2. Presentation Outline Introduction: study objectives, methods Presentation focus: Psychosocial impact of HIV diagnosis; reshaping identities in the context of a new HIV-positive diagnosis Quantitative data: demographics; mental health scales, indicators, variables Qualitative data: emerging themes regarding psychosocial responses following diagnosis Coping with social stigma Impact on family and work/career Impact on intimate relationships Attitudes towards HIV, HIV+ persons Having sex as an HIV positive person The future as an HIV positive person Discussion and Conclusions

3. Objectives To identify acutely infected MSM using innovative laboratory testing methods (NAAT and 4th generation EIA tests); To promote HIV testing as a first response to risk events through community based social marketing initiatives; To offer enhanced follow-up to acutely infected MSM; To describe the post-intervention experiences of acutely infected MSM; To identify factors associated with participation in the prescribed counselling program during the acute phase To describe psycho-social responses to newly acquired HIV disclosure, and; To model networks and outcomes that take into account the complexity of infectious disease transmission data.

4. Methods Mixed-methods (quantitative and qualitative) longitudinal cohort study Recruitment: April 2008-September 2012 Eligibility: Gay or MSM (other men who have sex with men) 19 or older Acute or recent diagnosed in GVRD* Enhanced HIV testing protocol (NAAT) for 6 clinics in Vancouver BCCDC STI Clinic (W.12 th ), Bute Street, HIM Sexual Health Centre, Spectrum Health, Three Bridges Community Health Centre, Dr. Richard Taylor Current participants: 11 (5 acute; 6 recent) Professional and peer based counselling Quantitative: self-admin questionnaires; sexual networking data Qualitative: semi-structured face-to-face interviews, thematic analysis

5. Variable Responses Variable Responses Age Range: 24-52 Mean: 39.1 Median: 41 Employment Status Full-time: 8 Disability: 1 Employment Insurance: 1 Prefer not to say: 1 Ethnicity Aboriginal: 1 Caucasian: 7 Hispanic: 1 South East Asian: 2 Relationship Status Single: 7 Partnered: 3 Dating one or more persons: 1 Education Some high school: 1 Completed high school: 1 Some college/univ: 3 Completed college/univ: 6 City of Residence Vancouver: 8 North Delta: 1 New Westminster: 1 Langley: 1 Income Less than $10,000: 1 $10,000-$30,000: 2 $30,000-$50,000: 2 Greater than $50,000: 4 Prefer not to say: 1 Living Situation Sole occupant rental: 3 Sole owner: 5 Living with family: 2 Other: 1

6. Mental Health Variables (1) Hospital Anxiety and Depression (HAD) Scale (Zimond and Snaith, 1983) : <8 (normal) ; 8-10 (borderline) ; >10 (clinically significant) Depression: 5.27 (mean); 7 (median) 1 borderline, 1 clinically significant Anxiety: 11.0 (mean); 11 (median) 1 borderline, 5 clinically significant History of depression (6), anxiety (6) Received treatment/medication for mental health issue (4) Received counselling/therapy for mental health issue (6)

7. Mental Health Variables (2) HIV/AIDS-targeted Quality of Life (HAT-QoL) Scale (Holmes, 1997) Disclosure , Health, Sexuality Quality of Life Variables Frequency I have limited what I tell others about myself All of the time: 3 A lot of the time: 4 A little of the time: 2 None of the time: 1 I worry about people at work finding out All of the time: 5 A lot of the time: 1 A little of the time: 1 None of the time: 4 I worry about family members finding out All of the time: 4 A lot of the time: 2 A little of the time: 1 None of the time: 4 I’m afraid to tell others I have HIV All of the time: 4 A lot of the time: 3 A little of the time: 2 None of the time: 0

8. Redefining Identity in the Context of a New HIV Diagnosis: Emerging Qualitative Themes Research on identity formation among gay men and HIV Relf et al. (2004): Gay identity formation, interpersonal violence and HIV risk behaviours Siegel et al. (1998): Stigma management among HIV+ gay/bisexual men Schwartzberg (1993): Gay men, HIV/AIDS meaning making Charmaz (1987): The struggle to redefine one’s identity is the central task facing chronically ill persons. Focus on gay identity reshaped following HIV+ diagnosis

9. Sub-theme 1: Coping with social stigma Selective disclosure to friends/peers Past relationships/close friendships with HIV+ persons “ Probably just acceptance I’m still the same person. There is still so much social stigma around the disease.” (Acute, age 41) “ They (friends) want to see if you are HIV positive then you know, there must be a correlation to your outward appearance… some of my friends, for instance, they will say, ‘Oh, you actually look very healthy.’ And of course the subtext is, you know, I’m HIV so, you know, it must show in my face.” (Recent, age 33)

10. Sub-theme 2: Impact on family and work Work: Stigmatization or discrimination Family: Concerns about stress, well-being “ I mean, if I get too many doctor’s appointments and I’m booking off lots of shifts, then people are going to ask questions. Like, “Are you okay?” “Yeah, I’m going to a doctor…But how many times can you tell people you’re going to the doctor?” (Recent, age 43)

11. Sub-theme 3: Impact on intimate relationships Anxieties about how romantic partners will react, particularly for those in sero-discordant partnerships “ Wow, I don’t know if he’s going to leave me because thinking the other way, if I’m negative, if I am with someone who is positive, I believe I wouldn’t stay in that moment.” (Acute, age 29)

12. Sub-theme 4: Attitudes towards HIV Reconciliation of previously held views about HIV HIV as a death sentence; treatment side effects; prevention responsibilities (i.e. disclosure, safer sex) “ You know, I would’ve maybe said I’m sorry but I’m not interested or comfortable with… dealing with somebody with HIV, but… yeah that was my first experience of somebody just sort of…ignoring you because of your HIV status” (Acute, age 52) “ I thought anyone that it happens to, in this day and age, they have to be, you know, high on crystal meth and getting fucked bare by 35 guys, and that kind of stuff.” (Recent, age 44)

13. Sub-theme 5: Sex as an HIV positive person Anticipating rejection; fear of infecting someone else; many changed/reduced sexual behaviour following dx Criminalization, disclosure policies, increased responsibilities for HIV+ “ I did have this lapse a while ago… when I forgot to tell someone that I’m HIV positive and we met on Manhunt, and in my profile it says there that I am HIV positive, but apparently he didn’t read my profile… and then I guess he read my profile again and then he emailed me ‘I didn’t know you were HIV positive.” (Recent, age 33) “ We used to bareback all the time, so it has been pretty different now. Like, even the condom is nothing but a thin layer of latex. It’s still a big difference. (Acute, age 29)

14. Sub-theme 6: Future as an HIV positive person Treatment anxiety and optimism Relationship seeking “ I think the most important change is going to be the day that I get told that I’m undetectable…. Like the way (patient’s doctor) goes, “I’m going to make you undetectable and you won’t be able to pass it on.” (Recent, age 43) “ It may sound kind of flippant, but I don’t worry about getting HIV anymore. It’s one less structure in my life.” (Acute, age 41)

15. Discussion and Conclusions Complex psychosocial processes relating to HIV+ and/or gay identity formation – implications for providers, care and support staff Importance of HIV+ persons in social networks in coping with diagnosis Enhanced education regarding treatment benefits and risks, criminalization

16. CIHR Acute HIV Study Team and Collaborators HIV Emerging Team National HIV and Retroviral Laboratories James Brooks National Lab for HIV Genetics Paul Sandstrom Terry Trussler, Rick Marchand, Olivier Ferlatte North Carolina HIV/STD Prevention Peter Leone Josephine McIntosh Mathematiics Department Daniel Coombs STI/HIV Prevention & Control Michael Rekart , Michael Kwag, Malcolm Steinberg, Bill Coleman, Mark Gilbert, Gina Ogilvie, Melanie Achen, Glenn Doupe, Daphne Spencer Mathematical Modeling Babak Pourbodoul, Rafael Meza Laboratory Services Mel Krajden, Darrel Cook, Wendy Mei Epidemiology David Patrick Benedikt Fisher Elgin Lim Jody Jollimore, Hans Bosgoed Wayne Robert Captain Snowden Rich Rothenberg Recruitment Sites 12 th Avenue, Bute Street, Spectrum Health, 3 Bridges, Dr Richard Taylor, Cook Street

17. Acknowledgements CIHR Acute HIV Study Operational Team: Malcolm Steinberg, Bill Coleman, Lauren Bailey, Cory Genereaux, and Michael Kwag Michael Rekart (PI) and study investigators Community partners: BCPWA, CBRC Research participants Contact Info: Michael Kwag, Research Project Manager [email_address]