Health Literacy Adherence and Retention Interventions

1. Health LiteracyAdherence and Retention Interventions Evelyn Bradley, DrPH Daniel Tietz Eileen Sheridan Altricia Belk November 28, 2012 Ryan White All-Grantees Meeting Washington, DC

2. Good Morning! AGENDA • Introductions • Proposed retention/self-management tool (multi-media education program) • 3 Adherence Interventions • Q&A on any health literacy topic

3. Introductions • Presenters • Session purpose

4. Multimedia education programs (MMEP) use a variety of media to communicate educational information: Live actors Pictures Text Sound Animation multimedia education tools for retention and self-managementEvelyn Bradleyand Daniel Tietz

5. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz MMEPs are effective health education tools…for people with varied literacy skill levels. Research showed that exposure to a plain language diabetes MMEP increased patients’ understanding of diabetes…no matter what their literacy competence. Kanula, Namratha et al, The relationship between health literacy and knowledge improvement after a multimedia type 2 diabetes education program, Patient Education and Counseling, 75 (2009), 321-327.

6. Knowledge improvement based on exposure to diabetes MMEP Questions answered correctly

7. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz • Let’s take a look • http://cch.northwestern.edu/edtools/diabetes.htm

8. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz • What makes this MMEP effective? • Plain language • Effective media per message • Brief (maximum 5-7 minutes) • Images are powerful and accessible • No need to be able to read

9. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz • What else might we like to see in an HIV MMEP? • Teach-back • Linkages to other segments • Comprehensive, covers all key messages whatever the person’s place along the continuum. • Northwest has developed 7 diabetes segments. • We will probably need more for HIV.

10. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz MMEP PROCESS As part of a National Quality Center Fellowship, I looked for comparable HIV MMEPs. I found some, but no HIV MMEPs had it all! I started to design an HIV MMEP.

11. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz MMEP PROCESS (continued) The diabetes researchers started by identifying 17 key messages people needed to understand the disease. I read HIV health education materials, and identified 400 messages given to PLWH/A! To select the key HIV messages:

12. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz MMEP PROCESS (continued) A dozen motivated experts convened this past February…PLWH/A, HIV PMC providers, educators, health literacy professors, and media experts, who provided feedback on both: Key HIV messages The most effective media To explain the HIV MMEP to prospective funders willing to develop the MMEP, I developed storyboards: graphic illustrations of proposed content.

13. HIV MMEP Structure—10 Segments or “clips” HIV and Me* New to HIV* HIV-Positive* • How People Get HIV* • HIV in the Body* • How HIV Medication Works • Managing HIV* • HIV and Real Life* • *Starred segments have storyboards • Untreated HIV • HIV Disclosure • Index—list of clips, with links • Resources—list of resources, with links multimedia education tools for retention and self-managementEvelyn Bradleyand Daniel Tietz

14. multimedia education tools for retention and self-managementEvelyn Bradley and Daniel Tietz SAMPLE STORYBOARD Think about whether a videolike this would be useful to you as a teaching aid, or helpful for your clients to view. When the MMEP is produced, live people will act out this segment. For other segments, animation will work better.

15. Messages: • Confusion after diagnosis is normal • First thing, get a doctor on your team • How to find a doctor • HIV is an incurable virus • HIV can be managed • There are serious consequences If HIV is not managed • AIDS is the final stage of HIV • HIV is usually spread through shared needles, unprotected sex, or from mother to infant • Take precautions, even if you are HIV-positive • Links to web resource for finding a doctor, segment list, resources • Links to other clips: How People Get HIV , HIV in the Body,HIV Disclosure Talk , How HIV Medication Works, Managing HIV,HIV and Real Life Newly-HIV+ Storyboard of HIV MMEP segment Introduction and links for newly-diagnosed PLWHA

16. Newly-HIV+ (2/23) John Smith here. If you just found out you have HIV there’s a lot you’ll want to know. I remember. Lots of questions. We’ll get to them. First thing you need to know. HIV has no cure. But people who manage HIV can live a long time. We’ll talk about how. John, Tamara, and Dr. Patel are all filmed…real people.

17. Newly-HIV+ (3/23) HIV Clip List— Resources If you want to see what I’m saying, click on the eye. If you want to turn off the sound, click on the ear. The “home” button starts this clip again. There’s a link in red to a list of the HIV clips in this series, and a link to other resources. Curser travels to the items he mentions.

18. Newly-HIV+ (4/23) HIV Clip List— Resources I want you to meet Tamara Tate. Recently, she found out she’s HIV-positive Live action John fades out—Tamara fades in.

19. Newly-HIV+ (5/23) HIV Clip List— Resources Last year when I found out I was positive, I freaked. What do I do now? What is HIV/AIDS? How did this happen to me? What will happen to my body? Am I going to die? Who’s going to know? Who should I tell?

20. Newly-HIV+ (6/23) HIV Clip List— Resources I said to myself, hold on…one thing at a time. First thing, I got linked with a good doctor. One I could talk to and who listened. I was lucky, ‘cause Doctor Patel knows a lot about HIV. First thing to do is find a doctor. Don’t worry about the money. If you don’t have much money, doctor visits and medication for HIV are free. If you don’t have a doctor, click on the HIV Docs button.

21. Newly-HIV+ (7/23) HIV Docs HIV Docs HIV Clip List— Resources HIV Docs button appears, moves to side, shrinking. This button links to http://findhivcare.hrsa.gov/Search_HAB.aspx Tamara: No worries if you don’t have money for a doctor. No worries if you don’t know a doc. You can also call the city or state health department. The phone operator can give you the number.

22. Newly-HIV+ (8/23) HIV Docs HIV Clip List— Resources Doctor Patel comes in to view, shakes hands Patel: Hello Tamara. Tamara: I remember when we first met. Action now shifts to the past…indicate this in some way…eg. picture gets wavy, and scene changes to a flashback to Dr. Patel’s office.

23. Newly-HIV+ (9/23) HIV Docs HIV Clip List— Resources Patel: Good morning, Tamara, I’m Doctor Patel. We’ll work together to manage your HIV. I know you’re worried. I want you to know HIV is not a death sentence. With care, you are likely to have a long life. What’s worrying you most?

24. Newly-HIV+ (10/23) HIV Docs HIV Clip List— Resources Tamara: Well I don’t know how I got HIV, and I don’t know what it is, and my Mom’s going to kill me when she finds out, and I think I’m going to die. Patel: Your worries are normal. One thing at a time.

25. Newly-HIV+ (11/23) HIV Docs HIV Clip List— Resources Patel: Let’s start with what HIV is. HIV is a virus. Flu is another virus, but HIV is different from flu. It’s with you for life. It doesn’t go away. There’s no vaccine and no cure. Also, if you and I together don’t control HIV, it does more damage than flu. HIV makes your body weak. Because your body is weak, you can get cancer or pneumonia or other bad diseases. HIV in the Body has more information.

26. Newly-HIV+ (12/23) HIV Docs HIV in the Body HIV in the Body? HIV Clip List— Resources HIV in the Body button starts at center and moves to one side, shrinking

27. Newly-HIV+ (13/23) HIV Docs HIV in the Body HIV Clip List— Resources Tamara: OK, that’s HIV, but what about AIDS? Patel: AIDS is the final stage of HIV. It’s not a different virus. If people don’t take their HIV medication. the HIV virus multiplies. HIV attacks defender cells in the immune system. This makes it harder for you to fight off other infections and cancers. That’s called AIDS.

28. Newly-HIV+ (14/23) HIV Docs HIV in the Body How People Get HIV HIV Clip List— Resources Tamara: Thanks, that’s a help Patel: What do you want to know now? Tamara: Well, I don’t know how I got infected Patel: There are two main ways adults get HIV. One is by having sex without a condom. The other is by sharing needles. HIV can also be passed from a mother who is expecting or nursing to her baby. How People Get HIV tells how HIV spreads.

29. Newly-HIV+ (15/23) HIV Docs HIV in the Body How People Get HIV HIV Clip List— Resources Tamara: I could have gotten it through sex or a needle. Patel: Whichever way you got HIV, you need to be very careful now to keep yourself safe. Even though you have HIV, you don’t want to get a different type of HIV. Be careful with needles and sex. Don’t share needles. Make sure sex partners always use condoms. That way you have a low risk of getting another strain of HIV—and a lower risk of infecting someone else.

30. Newly-HIV+ (16/23) HIV Docs HIV in the Body How People Get HIV HIV Clip List— Resources Patel: Any other concerns today? Tamara: I’m worried everyone will find out I have HIV

31. Newly-HIV+ (17/23) HIV Docs HIV in the Body How People Get HIV HIV Clip List— Resources Patel: That’s a big worry. Telling people you are HIV-positive is “disclosure.” Disclosure needs some thought. You should only disclose to people you trust –people whose support you need. Your sex and needle sharing partners can get HIV from you even if you don’t feel sick, so I need to contact them about their risk. But I won’t use your name.

32. Newly-HIV+ (18/23) HIV Docs HIV in the Body How People Get HIV HIV Disclosure Talk Disclosure Talk HIV Clip List— Resources Patel: No disclosure answer is right for everyone. But here’s a button to a clip of HIV-positive folks talking disclosure issues. Don’t let disclosure fears keep you from getting medical help. The health department knows you have HIV and is there to help. So go ahead and get treated.

33. Newly-HIV+ (19/23) HIV Docs HIV in the Body How People Get HIV HIV Disclosure Talk Managing HIV Managing HIV HIV Clip List— Resources Tamara: What are we going to do next? Dr. Patel: At our next visit, we’ll talk about managing your HIV. To the camera…Ifyou want to know more, click on the Managing HIV button

34. Newly-HIV+ (20/23) HIV Clip List— Resources Tamara: Thanks Doctor Patel, we covered a lot of ground. See you next visit. Scene shifts back to the present…indicate this in some way. Tamara speaks to the camera….Here are a few questions to help you figure out whether to go back and listen again. It’s not a test. It’s just for you. Click on the answers you think are right. I’ll be back after the review questions.

35. Newly-HIV+ (21/23) Will HIV kill me? Yes If you manage it you can live a long time When you find out you have HIV, first… Don’t panic See an HIV doctor Believe you can manage HIV Questions are read out-loud…as each response is read, answers are given immediately, with an explanation.

36. Newly-HIV+ (22/23) What is HIV? A bug A virus that doesn’t go away A punishment How do people get HIV? Usually sharing needles or through sex From the air From the water

37. Newly-HIV+ (23/23) How HIV medication Works HIV and Real Life HIV Clip List— Resources Tamara: I hope hearing my story helps you. At my next visit, Dr. Patel will talk about taking HIV medication. There’s a lot more to learn. You can follow that journey by clicking on How HIV Medication Works. When I joined a group of HIV-positive people I met some with problems that get in the way of managing HIV. There’s more about that in the HIV and Real Life clip. Good bye…and take care of yourself.

38. Do you think a MMEP will help your clients? Suggestions? multimedia education tools for self-managementEvelyn Bradley, Baltimore City Health Department

39. Shifting Gears

40. Adherence Tools • History • Tools: • Presentation: Take Your HIV Medicine on Time and Every Day • CD4/VL Chart • Pill Card

41. Take Your HIV Medicine on Time and Every Day • Purpose: to convey WHY it is important to take HIV medicine on time and every day. • Series of illustrations with few words—plain language. • Can be modified for specific clientele • Client offered a copy to take home. • Next: a few sample pages

42. If you take your medicine ON TIME and EVERY DAY, you keep enough medicine in your blood to defend you, and you will usually feel better.

43. After illustrations that “Non-adherence may lead to resistance, and you may need new medicines”…

44. And you and your doctor may run out of medicines that work. The new medicines may be hard on you, ?

45. CD4/VL Chart Designed by Case Managers at Queen AnnesCounty Health Department • Purpose: • Allows clients to see track their progress on both CD4 and VL on one page • Provides goals (“good” ranges) • Discussion tool for clinicians/case managers

47. Purpose: Give clients a reminder of when to take their medication. The pill card is customized to show the client’s specific medications. Pill CardBased on material in the AHRQ Health Literacy Toolkit

48. Sample Pill Card:http://www.ahrq.gov/qual/pillcard/pillcard.htm

49. Adherence Tool Exercise • Form Teams • One team member: • Read “Take Your HIV Medication on Time Every Day” to another team member. • Ask 5 questions to determine whether the material was understood. • Other team members observe. • Re-convene with larger group to discuss.

50. Discussion