AVRC Community Based HIV and Aging
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This document summarizes a proposed community-based research study on older adults living with HIV (OALWH) in San Diego. It discusses: 1) Engaging OALWH and community members to provide input and participate in HIV and aging research through a steering committee called "Platinum". 2) Developing a "village model" using a social app to help OALWH age in place by meeting their social and support needs within their community. 3) Conducting needs assessments, focus groups, and a pilot study using a social app to facilitate creation of a village for OALWH in central San Diego aimed at reducing isolation and improving access to services.
AVRC Community Based HIV and Aging
- 2. Community-Based HIV and Aging Research Maile Young Karris, MD Associate Professor of Medicine, UC San Diego Divisions ID&GPH and Geriatrics Owen Clinic Research Director SD CFAR Clinical Investigators Core ACTG ITSG HIV and Aging Working Group
- 3. Disclosures — Gilead Sciences: Advisory board and research funding to the institution — ViiV Healthcare: research funding to the institution
- 4. Background — Older adults living with HIV (OALWH) experience earlier presentation of medical and psychosocial multi-morbidity than HIV sero-negative peers — Surveys and focus groups of OALWH reveal concerns about their ability to age in place (HIV/age stigma, limited resources, loss of cognitive ability), a lack of sufficient social support, long term impact of ART … — Despite this data, most research in OALWH centers on pathogenesis of and interventions around inflammation and disease specific morbidities (ie CVD, NASH, CKD) — How do we close the gap between community concerns and research?
- 5. Platinum Study Steering Committee — Vision: Develop a diverse group of older adults living with HIV … — Mission: To create a forum for the community to provide input into HIV and Aging research — Provide pre-grant feedback and post grant implementation advice — Actively participate in grant implementation — Assisting with results interpretation/dissemination — Ultimately result in the collaborative performance of HIV and Aging research in areas that are important to the community
- 6. Platinum AIMS — Aim 1: To engage diverse voices of OALWH and foster involvement in HIV and Aging research — Aim 2: To encourage HIV and Aging researchers into collaboration with OALWH at all stages of research — Aim 3: To empower junior trainees and research associates to embrace and advocate for patient centered HIV and aging research
- 7. Platinum Update and Future — Aim 1: We are actively recruiting for Platinum – Need more diversity — Aim 2: I have engaged Platinum and received funding – ---Need to encourage more investigators--- — Data: planning post-pre surveys of Platinum experience (Platinum members and researchers) — Opening this up to ACTGs HAWG (remote presentations) Maile Young Karris: m1young@ucsd.edu or Marvin Hanashiro: mhanashiro@ucsd.edu
- 8. Data Platinum — Basic demographics — Prior occupation, self- assessed health status, chronic conditions, IADLs, health service utilization, Loyola generativity scale — Post-Pre Survey — Rosenberg Self-Esteem — MSQ SF — Organizational Commitment Questionnaire Investigators — Basic demographics — Investigator stage, funding status, grant details — Post-Pre Survey — MSQ — Perceived Utility — Would you re-engage — Outcomes — Grant funding status, publications, re- engagement with Platinum
- 9. The Story of 2nd AC+ — I needed to come up with a name for a new collaboration between community and academia — The Center recommended I consider a riff off ACT UP — The “second act” is a literature term that in three act narratives reflects the “rising action” that occurs when the protagonist attempts to solve problems that began in the first act, but finds themselves in worse situations due to a lack of skills to manage the forces that confront them — In the second act, the protagonist learns new skills, arrives at a higher awareness of themselves and is aided by others. — By the end of the second act, the protagonist – now HERO is ready to enter the last act.
- 10. 2nd AC+: Leveraging Technology to Create Communities of Care for Older Adults Living with HIV • Multiple challenges exists that impact healthy aging for OALWH • Premature multi-morbidity • Social isolation, loneliness • Access barriers to existing resources (HIV stigma, ageism, $) • OALWH also have high rates of optimism, resilience and compassion • How do we take those factors into consideration to help OALWH age-in-place?
- 11. Aging in place? — Aging in Place = Older adults can continue to live in their own homes and communities as they age — Informal assistance (family, friends, community) — Formal assistance — In home health services — Medicare care coordination — Housing with services — The Hybrid: The Village Model
- 12. What is the Village Model? • Started by friends who lived in Beacon Hill who wanted to continue to live in their neighborhood, but recognized they would need some help • Each member of the village pays an annual fee to support an administrator that members can contact to coordinate services and meet needs. • Currently > 200 Villages in the U.S. with many more in development
- 14. Village Goals — Help members age in place of choosing connected to their communities — Create opportunities for individuals to use their talents to benefit the village and community — Provide social activities to minimize isolation and promote interaction and trust within the village Village Characteristics — Reflect the needs of their members and communities — Provide a strong community that offers members new opportunities to age successfully — Designed to be inclusive and reflective of their communities — Community partners help to address the challenges of aging
- 15. Do Villages work? • 77% of members agreed they were more likely to stay in their own home as they aged • However persons with “poor health” are less likely to be associated with a village • Current villages lack significant socioeconomic diversity and are mostly white • Questions exist about sustainability and dissemination of the model due to need for annual membership dues to facilitate operations • Effective villages require leadership development and resource knowledge beyond that of the members
- 16. How do we overcome these barriers to disseminate the Village model? • To mitigate need for membership fees, leadership development, and resource knowledge … • We will anchor the Village in a funded, long standing, resource knowledgable institution = San Diego LGBT Center • To evaluate the effectiveness in a socioeconomically and ethnically diverse population … • We will engage OALWH living in the highest density HIV region in San Diego (Central region) • To enhance the real-time responsiveness to needs… • We will pilot use of a hyperlocal social app to display and meet needs
- 17. Where do we locate our Village?
- 18. San Diego Central Region Hillcrest North Park South Park Logan Heights/Barrio Logan Gaslamp Bankers Hill Mission Hills University Heights
- 19. Aims — Aim 1: Perform needs assessments and describe social network characteristics of OALWH and other persons living in the Central Region of San Diego — Aim 2: Determine barriers and facilitators of using a hyperlocal social app to facilitate development of a village around OALWH — Aim 3: Assess the acceptability and feasibility of a hyperlocal social app to facilitate access to services, and examine its impact on social network characteristics over 12 months
- 20. Community Needs Assessments (Aim 1) — To characterize the needs of OALWH AND other community members in the Central Region — Hypothesis: The unmet needs of OALWH will be variable but cluster around persons reporting the highest levels of social isolation — Survey performed asking about basic and psychosocial needs — Goal 2000 OALWH and 4000 other community members — Facilitated through the Center and hopefully other organizations — Electronic
- 21. 2016 older LGBT Needs Assessment — What three things are most important to you? — Social issues/support — Health and quality of life — Financial issues and concerns — LGBT affirmative housing/affordability — Health insurance and access to quality healthcare — LGBT identify and safety issues — Maintaining independence — Transportation — Home care services — Access to legal representation FEEDBACK SPECIFIC to OAWLH AND OTHER COMMUNITY MEMBERS NEEDS
- 22. Focus Groups (Aim 2) — To explore potential barriers and facilitators around forming a Village around OALWH and hyperlocal social app — Hypothesis: Barriers will exist (poor e-literacy), but participants will also identify facilitators (training sessions) that may overcome barriers — We will perform 15-20 diverse focus groups to participate in focus groups discussing the meaning of community, exploring the use of apps to facilitate community/needs and discuss barriers and facilitators of this approach
- 23. Observational Study (Aim 3) — To assess the acceptability and feasibility of the use of a hyperlocal social app to facilitate the Village model — Hypothesis: Use of a hyperlocal social app to facilitate the Village model will be acceptable to OALWH — We will enroll 50 OALWH and 100 community members to participate — Participants will be surveyed at entry, 1,3,6 and 12 months on acceptability and social network characteristics
- 24. Chummy App — Created to foster an urban ecosystem of kindness — Goal to help people to develop real-life connections based on trust and mutual support within your city — Reciprocal help, kind hearts and open minds — Gamification aspect: assigns chummycoins for tasks, special badges for persons with a consistent history of helping others
- 26. Chummy app
- 27. Outcomes — Primary outcome: Change in acceptability at 6 and 12 months (client satisfaction questionnaire) — Secondary outcomes: — Social network characteristics to describe the structure (network size, density) and composition (types of relationships and interactions) of participants — Psychosocial factors: Loneliness, Depression, Anxiety, Perceived stress, substance use, stigma — Other clinical outcomes: change in adherence to HIV primary care plan (i.e appointments completed), quality of life, self-reported function
- 28. Discuss!
- 29. Acceptance and Commitment Therapy for Chronic Pain Inclusion Criteria — HIV+ age > 50 years — Chronic non-cancer pain — English speaking — PCP deems appropriate for study Exclusion Criteria — Unwillingness to participate in audio recorded sessions — Enrollment in hospice — Moderate to severe neurocog deficits — Uncontrolled HIV infection — Undergoing other psychotherapy for pain Recruiting for part 1: 8 week 2 hours/week group therapy for the management of chronic pain
- 30. LATITUDE Study (ACTG 5359) — Long Acting Therapy to Improve Treatment sUccess in Daily LifE — Phase III Long Acting Antiretroviral Therapy in Non- adherent HIV-infected Individuals — ART experienced PLWH — HIV > 200 copies/mL — Inclusion: a) poor virologic response within 18 months b) loss to f/u within 18 months with ART non adherence > 6 consecutive months c) no clinically relevant RPV or INSTI resistance — Exclusion: Active drug or alcohol use/addiction, previous use of RPV or CAB