Older Adults Living with HIV

1. Older Adults Living with HIV Preliminary Findings from Exploratory Interviews January 28, 2010

2. Project Staff Principal Investigator: Michelle Long, SF Department of Public Health Robert Whirry, Program Consultant JT Taylor and Eiko Sugano, LFA Group Funded by the Flowers Heritage Foundation

3. Research Questions 1. What are the demographic and health characteristics, risk behaviors, and social networks of PLWH/A 65 years and over in San Francisco? 2. What are the circumstances around the transmission of HIV in this population, and what implications does this information have for HIV prevention and care in San Francisco?

4. Research Questions 3. What is the accessibility (including insurance and access to providers) and utilization of health and social services among this population? 4. What are the factors that affect decisions that PLWH/A 65 years and older make with respect to their health care and social service needs?

5. Research Questions 5. What are the unmet needs among this population? 6. In what ways can the HIV care and prevention services and partnering agencies improve upon their current provision of services and partnerships to ensure that PLWH/A have access to appropriate and timely care?

6. Methodology • IRB approval • Piloted instruments • Recruited through service agencies and health care providers • Screened participants based on age, HIV status, county of residence, time since dx, and race/ethnicity • Conducted in-depth in-person interviews • Conducted written survey • English and Spanish

7. Recruitment of Participants • Used SF epi data to identify top ten public agencies serving people over 65 living with HIV • Convenience sample recruited from those agencies, with help from service providers • Snowball sample using references from interviewees

8. Limitations • Small sample • Recruited mainly through city-funded providers, so interviewees were those who were linked into the public system of care and services • Limited to San Francisco residents getting care in San Francisco

9. Who have we talked with?

10. Who have we talked with?

11. Who have we talked with?

12. Who have we talked with?

13. Who have we talked with?

14. What did we hear? Importance of social support for older adults

15. What did we hear? “At the clinic I’m the oldest one, the grandma. I would like to participate [in support groups] but have not been able to. Only church but that is spiritual. Going to church helps me as long as I don’t mention my illness. It’s spiritual health but not moral support. … In my life people don’t accept a person like me.”

16. What did we hear? “To have a good circle of friends and socialize on a daily basis with people, not isolating yourself – this is the most important thing for elderly people. … The first step would be those kinds of events which bring people together. Maybe not only lunch, but maybe dancing or some other way of congregating together.”

17. What did we hear? Focus on the present

18. What did we hear? “I try to stay as active as I can. I just try to get up, and I tell people even if I have to lean forward and fall into this next step, I’m still moving ahead. Get up and take care of everyday life. Just try to get up with a purpose, having something to do that day. Get up, even if it’s only a small something.”

19. What did we hear? “When you’ve been where I was, every day is great. Being able to walk outside the house without a cane or anything. It’s great.”

20. What did we hear? Strong desire to not infect others

21. What did we hear? “I let them know my status, first of all, and then be careful in what we are doing. [My relationships] are more on a social level at first – it is not a deep sexual involvement in the beginning at all.”

22. What did we hear? “I have always lived with that doubt that I might have infected somebody else. So I stopped seeing him because I was older; he was a nice person but I did not want to be with anyone else.”

23. What did we hear? Anti-HIV stigma affects health and social support

24. What did we hear? “There’s a stigma that people over the age of 44 aren’t supposed to be having sex, so therefore, they shouldn’t be HIV positive. But they don’t take into consideration that there are older people out there having sex.”

25. What did we hear? General satisfaction with existing services and care in San Francisco

26. What did we hear? “This city has been such a fantastic support network here – they fulfill all my needs as an older person. And I feel very confident and secure that I will be able to stay in my home. I have a subsidy. I have MediCal and MediCare now. I also have ADAP, which takes care of the co-pay. And I go to the food bank. So it’s like, if this HIV was a curse for most people, it sort of turned into a blessing for me.”

27. What did we hear? “There’s a lot of advantages of being in a city clinic, if you can get in. For one thing they take very good care of you medically, and when I had to get ADAP they just did it all for me. Then when I turned 65 and had to get Plan D, they did it all again.”

28. What did we hear? “The way [my clinic] makes you feel comfortable about yourself and your situation, asking questions and trying to help – that is unique. All the people in this health center are very caring, and it shows they have more time for the patient than this big Kaiser Corporation.”

29. What did we hear? Health needs are generally being met

30. What did we hear? “My health is better than a lot of the older people I know because they have other problems. Not HIV problems necessarily, but they have other health issues as they get older. I think I’m probably in better shape than a lot of them.”

31. What did we hear? “I see other people my age and I quite often feel that they don’t take care of themselves as well.”

32. What did we hear? Increase in awareness of HIV after diagnosis

33. What did we hear? “All of the retreats I go to, there’s always an HIV doctor there, explaining things. Every time I go to my doctor, I have a whole list of questions I ask him, and anybody who is knowledgeable about HIV, I pick their brain and find out if there is anything that relates to me and because of that I learn.”

34. What did we hear? “At that time I used to hear so many bad things about AIDS and that you died the next day, but I have been living with it for 9 years. ... I did not have any information about this and I kept it a secret. I didn’t want to give my hand to anybody because I thought I was contagious, but I kept getting information when I started coming to this clinic and I learned that by hugging someone I couldn’t infect them.”

35. What did we hear? Services needed include in-home services, transportation, affordable housing, social outlets, ombudsman/advocate to help get benefits

36. What did we hear? “It is difficult for me to leave my house. I live on the second floor for Fridays are hard when I get my groceries and I have to climb the stairs with all the bags.”

37. What did we hear? “It would be nice if there were more social outlets for people who are over 65 and have HIV.”

38. What did we hear? “I don’t have transportation but I would like it. I get around on the bus, but in an emergency I would not have access.”

39. Discussion and Questions • Did anything surprise you? What? • What resonates with your own experiences and observations? • What else would be interesting and important to learn? • What further research would you like to see happen in this arena? • What ideas do you have for who might be interested in funding further research to answer these questions?

40. Contact Information Michelle Long Michelle.Long@sfdph.org Robert Whirry RobLink@aol.com JT Taylor JT@LFAgroup.com Eiko Sugano Eiko@LFAgroup.com