Caring Across HIV: Aging/Living/Justice

Transcription

1 Caring Across HIV: Aging/Living/Justice Sept 26, 2013 Mark Brennan-Ing, ACRIA Suzan Walters, HIV PJA & SUNY Stony Brook Trishala Deb, Caring Across Generations Moderator: Julie Davids, HIV PJA Follow the conversa/on on Use hashtags: #JustAging

2 Webinar Instructions All attendees are in listen-only mode Everyone can submit questions at any time using the chat feature This webinar has too many attendees for questions to be submitted over the phone. During Q & A segment the moderators will read selected questions that have been submitted If you are having audio or webinar trouble go to preventionjustice.org for troubleshooting help

3 Raise your Hand, Use the Question Feature to Ask Questions, or questions You may also your questions to

4 Today s Agenda Agenda & Opening Remarks Ø Julie Davids, HIV Prevention Justice Alliance Overview of Aging Issue for People Living with HIV and LGBTQ Elders: What does the data show, what are the policies we need? Ø Mark Brennan-Ing, Director of Research & Evaluation ACRIA Lives of our Network: Stories from the Caring Across HIV Storybank Project Ø Suzan Walters, Aging/Living/Justice Research Fellow & Ph.D candidate - HIV Prevention Justice Alliance & SUNY Stony Brook Caring Across Generations: Next Steps and Collaboration across our issues Ø Trishala Deb, Director of Strategic Partnerships - Caring Across Generations Q&A, moderated by Julie Closing Thoughts & Next Steps

5 Post-webinar Conference Call Join us: Ø Thursday, October 3 rd 2pm-3:30pm ET Call-in info: Ø +1 (866) Ø Code:

6 HIV and Aging Overview of an Aging Epidemic, a Population in Need, and Program & Policy Implications Mark Brennan-Ing, PhD Director for Research and Evaluation ACRIA Center on HIV & Aging, New York, NY New York University College of Nursing, New York, NY Caring Across Generations Webinar September 26, 2013

7 Why is the HIV Population Graying? With the advent of successful antiretroviral therapies, adults 50 and older will be the majority of people living with HIV in the U.S. by However, part of this growth is new infections, with adults 50+ accounting for approximately 11% of all new HIV infections 2 1 United States Senate Special Committee on Aging. HIV over Fifty: Exploring the New Threat. [Web cast]. May 12, Available at 2 Brooks et al. (2012). (Am J Public Health. Published online ahead of print June 14, 2012: e1 e11. doi: /ajph

8 Median Life Years at Age 20 With HIV In- Care ARVs '85-87 '90 to '92 '95 to '97 '00 to '02 '03 to '05

9 A National Trend 40 % and more % % 19 % and less % of People with HIV Age 50 and Older

10 Challenges for HIV+ Older Adults Many present with a range of mental health problems, such as depression and substance use. HIV stigma contributes to social isolation through ostracism, rejection, or self-protective withdrawal (Emlet, 2006). Older HIV+ adults often have limited and inadequate social networks, the primary sources of instrumental and emotional support for most older adults (Shippy & Karpiak, 2005a; 2005b). 10

11 Older Adults with HIV: An In-depth Examination of an Emerging Population M. Brennan, S. E. Karpiak, R. A. Shippy & M. H. Cantor Nova Science Publishers (2009) Table of Contents 1. The Emerging Population of Older Adults with HIV and Introduction to ROAH the Research Study, S. E. Karpiak & M. Brennan 2. Health Status, Comorbidities, and Health-related Quality-of-Life; R. J. Havlik 3. Mental Health; A. Applebaum & M. Brennan 4. Substance and Alcohol Use; A. Applebaum & M. Brennan 5. Sexual Behavior among HIV+ Older Adults; S. A. Golub, C. Grov, & J. Tomassilli 6. HIV Stigma and Disclosure of Serostatus; M. Brennan & S. E. Karpiak 7. Social Support Networks of Older People with HIV; M. H. Cantor, M. Brennan, & S. E. Karpiak 8. Loneliness among Older Adults with HIV; M. Brennan & A. Applebaum 9. Psychological Well-being; M. Brennan & S. E. Karpiak 10. Religiousness and Spirituality; M. Brennan 11. Aging with HIV: Implications and Future Directions; S. E. Karpiak & M. Brennan 12. About the Authors 13. Appendix: Methodology of the ROAH Study 11

12 Comorbidities in ROAH 12

13 Average Number of Comorbidities Elderly 70+ ROAH 13

14 Center for Epidemiological Studies- Depression Scale (CES-D) Moderate (16-22) 20% Severe (23+) 43% Not Depressed (1 to 15) 37% 14

15 Depression in ROAH vs. Other Older Adults

16 Over 2/3 of the study group had moderate to severe depression Depression Causes Non-Adherence to ALL Medication including HIV Meds Although in Care their Depression Remains Poorly Managed 16

17 ROAH: Disclosure of HIV Status (%) Healthcare 90.5 Sexual partners 68.2 Family 65.7 Friends 65.2 Social groups 52 Drug buddies 44.6 Co-Workers Place of Worship

18 Informal Network Composition Parent Child Sibling Other Relative Friend Living Functional 18

19 Social Network Types Isolated (32%) the most socially isolated, had intermediate contact with their children, little contact with other family members or friends, and little interaction with religious groups Friend-Centered (35%) had contact with friends but not with children, family or religious groups. Integrated (33%) had the broadest spectrum of relationships, including children, family, friends, and the highest levels of religious participation 19

20 Sample Convenience sample recruited at the offices of Gay Men s Health Crisis (GMHC) in 2009 N = 180 Inclusion Criteria: HIV-positive 50 years of age and older Fluent in English Accessed services at GMHC in the past six months Average age was 55.5 years Seventy-eight percent were Men, 22% were Women 55% gay or lesbian/15% bisexual/30% heterosexual Nearly equal proportions of Caucasian, Black/African American, and Latino Respondents

21 Health and Comorbidities On average, participants reported 3.4 comorbid conditions The average CES-D score was 11.0 (SD = 6.3) Many researchers have defined CES-D scores of 14 or higher as indicative of severe depression. Thirty-five percent of respondents had scores at or above 14 and were classified as severely depressed, while another 18% were moderately depressed.

22 IADLs 40% 35% 35% 30% 25% 20% 14% 14% 18% 20% 14% 15% 10% 5% 0% Handling Money Taking Meds Housework Prepare Meals Shopping Telephone On average, respondents reported difficulty with 1.3 IADL tasks

23 PADLs 30% 25% 20% 17% 15% 11% 10% 11% 9% 9% 10% 5% 0% Bathing Taking Care of Appearance Dressing Feeding Yourself GeRng in or out of bed Walking around a small room On average, respondents reported difficulty with 0.6 PADL tasks.

24 Findings on Service Needs Meals at Home Home Repairs Counseling Transport for Medical Care Home Health Care SocializaJon 0% 10% 20% 30% 40% 50% 60% Needed Need Met

25 Access Service Barriers Barriers to Services among Older Adults with HIV by Gender (Valid Percents). Service Barrier Total % Women % Men % Don t Think Services are Available Locally * Don t Know Where to Go for Services Would have to Wait Too Long for Services Unable to Afford Services Unable to Receive Free Services Process of GeRng Services Too Confusing or Difficult *** Hard to Get There (Transporta`on) * p <.05; ** p <.01; *** p <.001 Chi- square tests of significance.

26 Staff/Organizational Barriers Barriers to Services among Older Adults with HIV by Gender (Valid Percents). Service Barrier Total % Women % Men % ** Service Providers Don t Like People Like Me Afraid Won t Receive Treatment *** Staff Doesn t Speak the Same Language as Me * Trouble Expressing Needs to Staff Staff are Unhelpful or Unmo`vated * p <.05; ** p <.01; *** p <.001 Chi- square tests of significance.

27 Contextual Service Barriers Barriers to Services among Older Adults with HIV by Gender (Valid Percents). Service Barrier Total % Women % Men % * Don t Know What to Do with Kids When GeRng Services Caregiving Interferes with GeRng Services * Hard to Make/Keep Appointments Family/Friends Don t Approve of Services ** HIV Status May Be Disclosed * p <.05; ** p <.01; *** p <.001 Chi- square tests of significance.

28 Barriers and Services Used Variable Mean SD Skewness Service Barriers Government Offices/Agencies HIV- related Services Health & Long- term Care Other Older Adult Services

29 Summary In addition to HIV, those aging with the virus face the significant challenge of multi-morbidity, i.e., managing multiple chronic conditions Retention in care is critical to successful aging with HIV, and must be improved to address longterm health care costs Those ageing with HIV lack the informal social supports to assist them as they grow older, and will increasingly turn to community based services However, there are considerable barriers and unmet need for services in this population

30 Older PWHA Use Many Services Examining the 15 non-hiv related services reported in previous study on older adults, older PWHA use 3.6 services on average, compared with 1.0 services among adults 65 and older (t [1888] = 21.16, p <.001) (Cantor & Brennan, 1993; 2000) This is a function of: greater service needs a high level of comorbid health challenges a lack of informal social resources Brennan, M., Seidel, L., London, A. S., Cahill, S. E., & Karpiak, S. E. (in press). Service u`liza`on among older adults with HIV: The joint associa`on of sexual iden`ty and gender. Journal of Homosexuality. 30

31 Implications Community-based services are unprepared and unaware of the impending influx of older HIV+ adults. Need to refer those growing older with HIV into mainstream ageing services Same service needs as typical older adult Need for cultural competency re: HIV and LGBT issues among ageing providers Need to network with HIV providers Implementation of geriatric care models for older adults with HIV Targeted programs and policies are needed to improve care retention and treatment adherence

32 Thank You! For further informajon please contact: Mark Brennan- Ing, PhD Director for Research and EvaluaJon AIDS Community Research IniJaJve of America 575 Eighth Avenue, Suite 502 New York, NY (212) ext

33 Lives of our Network: Stories from the Caring Across HIV Storybank Project Suzan Walters HIV Prevention Justice Alliance Aging/Living/Justice Research Fellow AIDS Foundation of Chicago PhD Student, State University of New York - Stony Brook swalters@aidschicago.org

34 Presentation Summary Data and Method Key Findings/Themes Conclusion

35 Data and Method Data was collected beginning August 2013 and is still in process A call for stories went out across the HIV PJA network and the Graying of AIDS network Eight semi-structured in depth interviews have been conducted 6 men, 2 woman 5 homosexual, 3 heterosexual Florida, Illinois, New York, Tennessee, North Carolina Ages HIV+, 3HIV- 20 informal videos taken at USCA (not included in analysis):

36 Caring Across HIV

37 Caring Across HIV Caring is so much more than the medicines we prescribe Jim Eigo

38 Caring for a Loved One I m pleased that I could present what I had to do in that kind of positive note for him, because that kept him from feeling so bad about it. - Larry

39 Caring For a Loved One Every morning, as soon as it s light, when I'm laying in bed half awake, the very first thing I do is look over to see if his chest is going up and down. It s the very first thing I do every day, as soon as I open my eyes. When he s been napping for a long time which he does; he sleeps a lot I tiptoe over to the bedroom door and look in to make sure his chest is going up and down. - Melissa

40 Activism I discovered a whole lot of new friends at the task force that were marvelously wonderful people, who then gave me the support system I needed to keep myself in a state where I could do what I needed for him. - Larry

41 Activism

42 Activism My activism is my mission, it is my calling, it's why I'm still here. - Reginald T. Brown

43 Empowered

44 I am the face of AIDS

45 Stigma

46 Bringing Skills & Knowledge

47 Trouble with the System I have a basic guideline that health care and food and shelter are just basic human rights, but not everyone is getting them. Paul

48 What about our Future?

49 What about our Future?

50 Conclusion Need for better care system Activism positively helps individuals and society Mental Health and positive HIV status Stigma and positive HIV status

51 Thank You For further informajon please contact: Suzan Walters HIV PJA Aging/Living/JusJce Research Fellow HIV PreventaJve JusJce Alliance AIDS FoundaJon Chicago hhp://

52 !"#$%&$%'(")'*#+'*)',#-) Trishala Deb Director of Strategic Partnerships Caring Across GeneraJons

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60 Caring Across Generations in 2013: POLICY CHANGE Utilizes expertise and power of strong coalition partners Builds on 2012 civic engagement work Pilot programs and incremental change that improves lives Organizes institutions and educates policy makers on our issues + CULTURE CHANGE Harnesses the power of pop- culture, communications and storytelling to change hearts and minds Seeds care issues into mass culture and mainstreams the issue Breaks down cultural barriers to change + ONLINE CAMPAIGNING Builds scale through low barrier activitiescreates strategies linking online and offline actions Cultivates and distributes content that re-shapes the care conversationvehicle for linking our field, legislative, media and culture change strategies A POWERFUL CARING MAJORITY THAT CAN WIN 60

61 By entering the conversation through quality care and support, we can channel the online movement to address the broader issues of our coalition Quality Care & Support Aging Disability Worker s Rights Immigration Medicaid Reform Economic Growth Unemployment

62 Questions? You may also your questions to

63 Want To Share Your Caring Story? Contact us! Suzan Walters at or Julie Davids at Submit stories by visiting here: tinyurl.com/q38qmhz Stories can also be submitted anonymously: tinyurl.com/ o9q68fw Checkout for storybank stories Visit the HIV Prevention Justice Alliance Youtube channel: bit.ly/16lvqwq

64 Post-webinar Conference Call Join us: Ø Thursday, October 3 rd 2pm-3:30pm ET Call-in info: Ø +1 (866) Ø Code:

65 Thank you! HIV Prevention Justice Alliance: Ø Stay up to date on advocacy opportunities with our blasts! Ø Follow HIV PJA on