1. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 1 The University of Illinois at Chicago Howard Brown Health Center Treatment Advocacy Program HIV Communication Intro

2. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 2 Talking about HIV Status Review experiences talking about HIV Review experiences talking about HIV Decide who you should & should not talk to about HIV Decide who you should & should not talk to about HIV Learn basic disclosure techniques Learn basic disclosure techniques Practice and plan for disclosure Practice and plan for disclosure Goals of this visit:

3. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 3 Disclosure Experiences Sex partner(s)? Friends?Family?Co-workers?Others? How has it been talking about your HIV status with… Your Doctor or health care provider(s)?

4. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 4 Past disclosure experiences What strategies worked? What strategies worked? What did not work? What did not work? What positive reactions were there? What positive reactions were there? …negative reactions? …negative reactions? How did that conversation go? What reactions surprised you? What reactions surprised you? how & why? how & why?

5. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 5 Disclosure and coping with HIV..increase intimacy or support?..increase intimacy or support?..increase safer sex?..increase safer sex?..feel better about yourself?..feel better about yourself?..stay with meds or treatment?..stay with meds or treatment? Anything else? Anything else? How has talking about HIV helped you…..cope with HIV issues?..cope with HIV issues?

6. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 6 Avoided disclosures Who has it been difficult to talk to about HIV? Health care provider(s)? Sex partner(s)? Friends?Family?Co-workers?Others?

7. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 7 Non-Disclosure & coping..changed your feelings about yourself?..changed your feelings about yourself?..interfered with a relationship?..interfered with a relationship?..been related to alcohol or drugs?..been related to alcohol or drugs?..interfered with your HIV medicine?..interfered with your HIV medicine? Any other difficulties? Any other difficulties? How has not talking about HIV.....made it difficult to live with HIV?..made it difficult to live with HIV?

8. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 8 Barriers to disclosure Fear of stigma or rejection Fear of stigma or rejection Not wanting to think about HIV Not wanting to think about HIV Feeling ashamed or embarrassed Feeling ashamed or embarrassed Not wanting to hurt the other person Not wanting to hurt the other person Afraid of losing a relationship Afraid of losing a relationship Feeling sad, depressed, or angry Feeling sad, depressed, or angry What makes it difficult to talk about HIV? Which of these are most important to you?

9. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 9 Barriers analysis So the most important the personal barriers to disclosure for you are… Cite key barriers How has this kept you from talking about HIV ? How has this kept you from talking about HIV ? Is it realistic? Does it make sense? Is it realistic? Does it make sense? What would you change about this? What would you change about this? Possible change goals and plans? Possible change goals and plans?

10. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 10 Disclosure and Social Support..feel better about yourself?..feel better about yourself?..increase sexual safety & intimacy?..increase sexual safety & intimacy?..help with HIV treatment or meds?..help with HIV treatment or meds? How could disclosure help you....get support for living with HIV?..get support for living with HIV? From friends From friends family family medical or other services medical or other services

11. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 11 Change motives What would you like to change in the way you talk about HIV? Feel more comfortable with HIV disclosure? Feel more comfortable with HIV disclosure? Disclose to more people? Who? Disclose to more people? Who? Disclose to different people? Disclose to different people? Talk to sex partners about HIV and safety? Talk to sex partners about HIV and safety?

12. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 12 General disclosure, intro. Lets discuss how you might talk about HIV to friends or family … people other than sex partners.

13. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 13 General disclosure difficulties How do you expect him / her to react? How do you expect him / her to react? How would you like him / her to react? How would you like him / her to react? What if s/he reacts negatively? What if s/he reacts negatively? Who have you wanted to disclose your HIV status to? What are your goals for disclosing to him / her? What are your goals for disclosing to him / her? How would disclosing be better for you? How would disclosing be better for you? How would it help him / her? How would it help him / her?

14. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 14 General disclosure Particular time & place? Particular time & place? Set up the situation? Set up the situation? Disclosure steps When & where can disclosure be safe & effective? Have an opening statement Have an opening statement What has worked in the past? What has worked in the past? What have people said to you that worked? What have people said to you that worked? How can you bring up the topic?

15. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 15 General Disclosure, 2 What do you want him to understand about you? What do you want him to understand about you? Keep eye contact. Keep eye contact. How can you discuss your status directly? How can you discuss your status directly? Be clear on what you want to say What do you want him / her to know when you are done? What do you want him / her to know when you are done? Disclosure steps

16. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 16 General Disclosure, 3 How can you acknowledge his / her concerns or fears? How can you acknowledge his / her concerns or fears? How can you talk about treatment and how you are coping? How can you talk about treatment and how you are coping? What positive, optimistic things can you communicate? What positive, optimistic things can you communicate? Where could you refer him / her for more information? Where could you refer him / her for more information? Be upbeat Disclosure steps No guilt! Do not apologize. No guilt! Do not apologize.

17. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 17 General disclosure; plan Who will you disclose to? What do you want to communicate? Action plan: Lets set a concrete plan: Click for Communication planning worksheet What difficulties do you anticipate? What difficulties do you anticipate? What will facilitate the discussion? What will facilitate the discussion? What will you say? What will you say? How will you say it? How will you say it? Place and time? Place and time?

18. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 18 Feasibility check; general How will these disclosure steps work for you? What else could help you talk about your HIV status? What else could help you talk about your HIV status? How can you make it happen? How can you make it happen? When can we check in on how this went? When can we check in on how this went?

19. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 19 Sex partner, opening Now lets talk about sex partners…...in terms of HIV disclosure and talking about sexual safety.

20. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 20 Overall attitudes toward HIV disclosure. What challenges have you faced? What challenges have you faced? What is working well? What is working well? What would you change or improve? What would you change or improve? What is your general strategy for talking about HIV with partners?

21. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 21 Sexual disclosure; partner types Which partners should know your HIV status?..anal or vaginal sex?..anal or vaginal sex?..unprotected sex?..unprotected sex?..close relationship or planning for sex?..close relationship or planning for sex?..casual partners?..casual partners? Who else? Who else? Which partners should not know your status? Why not?

22. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 22 Goals for sexual disclosure What would be practical goals for disclosing HIV status? Negotiate sex and safety with partner? Negotiate sex and safety with partner? Be out about HIV infection? Be out about HIV infection? Make it O.K. to take meds? Make it O.K. to take meds? Start relationship & build trust Start relationship & build trust

23. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 23 Goals for non-disclosure Practical goals for NOT disclosing? Easier to get partners? Easier to get partners? Avoid hassle or anxiety in partner(s) Avoid hassle or anxiety in partner(s) Privacy Privacy How do you ensure safety? How do you ensure safety?

24. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 24 Sexual disclosure; facilitators Which partners have you been able to talk to about HIV or safety? New or casual partners? New or casual partners? Steady lovers or primary partner? Steady lovers or primary partner? Partners who tell you their status? Partners who tell you their status? Who else? Who else? None

25. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 25 Sexual disclosure; past experiences Who was it? Who was it? Where & when? Where & when? How did you bring it up? How did you bring it up? What positive reactions were there? What positive reactions were there? Negative reactions? Negative reactions? How did that work?

26. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 26 Sexual disclosure; difficult partners Which sex partners are difficult to talk to about HIV or safety? New or casual? New or casual? Steady or primary? Steady or primary? Partners who are not HIV+? Partners who are not HIV+? Gave you something for sex Gave you something for sex...got you high...?...paid for evening?...drugs or money? Who else? Who else? Someone who has power? Someone who has power? … high status? …really hot?

27. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 27 Sexual disclosure: barriers Stigma / rejection? Stigma / rejection? Having to think about HIV? Having to think about HIV? Feeling like damaged goods? Feeling like damaged goods? Less chance of getting sex? Less chance of getting sex? Makes sex inhibited or less hot? Makes sex inhibited or less hot? Why is it hard to disclose with sex partners?

28. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 28 Sexual disclosure: difficult settings When trying to meet someone? When trying to meet someone? In certain places? (bars, parties?) In certain places? (bars, parties?) When you or your partner are high? When you or your partner are high? During certain moods or feelings? During certain moods or feelings? After you have had sex once? After you have had sex once? When else? When else? When is it hard to talk about sexual safety?

29. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 29 Facilitating sexual disclosure When is it easier to talk about sexual safety? When you know the person well? When you know the person well? If you know the other person is HIV +? If you know the other person is HIV +? Before you get in bed? Before you get in bed? Before you drink or get high? Before you drink or get high? When s/he knows your HIV status? When s/he knows your HIV status? When else? When else?

30. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 30 Choose sexual disclosure partner Now think of a sex partner to use for an example of talking about HIV. Who is s/he? Who is s/he? What kind of partner (long-term / causal / etc.) ? What kind of partner (long-term / causal / etc.) ? How do you expect him / her to react? How do you expect him / her to react? How would you like him / her to react? How would you like him / her to react? What if s/he reacts negatively? What if s/he reacts negatively? What are your goals for disclosing to him / her? What are your goals for disclosing to him / her?

31. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 31 Sexual disclosure steps; intro. Lets go through some communication steps

32. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 32 Sexual disclosure steps, 1 Date first to establish trust & communication? Date first to establish trust & communication? Use chat rooms / friends / ads to find partners comfortable with HIV+ men? Use chat rooms / friends / ads to find partners comfortable with HIV+ men? Exchange names / personal information first to set the stage Exchange names / personal information first to set the stage What else might help? What else might help? First; Have a strategy Steps for sexual disclosure

33. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 33 Sexual disclosure 1 Steps for sexual disclosure Bring up the topic before sex...best time & place?..best time & place? When can disclosure be safe & effective? When can disclosure be safe & effective? Right away in the relationship? Right away in the relationship? After some hot / intimate talk? After some hot / intimate talk? When you are sure you will have sex? When you are sure you will have sex? Before getting to where sex will happen Before getting to where sex will happen Not too high or drunk? Not too high or drunk?

34. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 34 Sexual disclosure 2 What have you said in the past that worked? What have you said in the past that worked? What have people said to you that worked? What have people said to you that worked? How can you use HIV disclosure to increase safety? How can you use HIV disclosure to increase safety? Have a "Safety statement. Steps for sexual disclosure

35. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 35 Sexual disclosure 3 How can you suggest positive & "hot" sex that is still safe? How can you suggest positive & "hot" sex that is still safe? Practice replacing we should statements with I want statements Practice replacing we should statements with I want statements Steps for sexual disclosure How can you acknowledge his / her concerns or fears about HIV? How can you acknowledge his / her concerns or fears about HIV? Be positive: No guilt!

36. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 36 Sexual disclosure 4 Be clear about what you want to say. Be clear about what you want to say. Discuss your status directly. Discuss your status directly. Keep eye contact. Keep eye contact. Be clear in your own mind what you will & will not do sexually. Be clear in your own mind what you will & will not do sexually. How can you refuse risk out loud and give a reason? How can you refuse risk out loud and give a reason? Steps for sexual disclosure Be assertive & clear.

37. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 37 Sexual disclosure 5 Restart the communication steps? Restart the communication steps? Leave the situation? Leave the situation? How will you take care of yourself if the person reacts negatively? How will you take care of yourself if the person reacts negatively? Back-up Plan: What if s/he does not respond? Steps for sexual disclosure

38. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 38 General disclosure; plan Who will you disclose to? What do you want to communicate? Action plan: Lets set a concrete plan for talking to sex partners… Click for Communication planning worksheet What difficulties do you anticipate? What difficulties do you anticipate? What will facilitate the discussion? What will facilitate the discussion? What will you say? What will you say? How will you say it? How will you say it? Place and time? Place and time?

39. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 39 Feasibility check; sex Would these steps work for you? What else could help you disclose your HIV status to partners? What else could help you disclose your HIV status to partners? What would help with talking about sexual risk or safety? What would help with talking about sexual risk or safety? How can you make it happen? How can you make it happen? Should we practice a safety discussion? Should we practice a safety discussion? Steps for sexual disclosure

40. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 40 Checking in About todays visit How did it feel to talk with me about disclosing your HIV status? Did we get a chance to discuss the topics that are important to you? How could we have addressed your concerns better?

41. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 41 Advocates notes & checklist Referral sheet (if used) Referral sheet (if used) Communication worksheet Communication worksheet Next appointment hand card Next appointment hand card Visit Notes Form and Visit Log for file. Visit Notes Form and Visit Log for file. Remember: call or e-mail if you have any questions or concerns. Visit checklist

42. UIC / HBHC Treatment Advocacy Program Main Menu TAP: HIV Communication 12/9/03 42 HIV Communication Planning Worksheet Action Steps Communication Goals Person Fill in one or several people / sex partners to communication with. Fill in one or several people / sex partners to communication with. Note your goals for each; what specifically do you want to communicate? Note your goals for each; what specifically do you want to communicate? Fill in your communication steps; make them specific, concrete, do-able. Fill in your communication steps; make them specific, concrete, do-able. TAP Planning worksheet, UIC / HBHC Treatment Advocacy Program Participant ID: _______ Advocate___________ Date ___________ Visit code _____