Mobilizing knowledge on cognitive aging with HIV

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Abstract Cognitive impairment is a growing concern for people aging with HIV (PAHIV), yet awareness of cognitive changes and management strategies remains low among PAHIV and healthcare providers. We hosted a bilingual (English and French), hybrid knowledge mobilization event (“Unlocking Vitality”) with over 55 participants, including PAHIV, caregivers, clinicians, and researchers. The event generated a list of priorities for PAHIV to feel more satisfied with healthcare and better understand and cope with changes in cognition. Future events should continue to reduce uncertainties of aging and strengthen connections between PAHIV, service providers, and researchers to center lived experience and improve care.
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Hui, Francisco Ibáñez-Carrasco, Kate Murzin, Rachel Landy, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7237174/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Cognitive impairment is a growing concern for people aging with HIV (PAHIV), yet awareness of cognitive changes and management strategies remains low among PAHIV and healthcare providers. We hosted a bilingual (English and French), hybrid knowledge mobilization event (“Unlocking Vitality”) with over 55 participants, including PAHIV, caregivers, clinicians, and researchers. The event generated a list of priorities for PAHIV to feel more satisfied with healthcare and better understand and cope with changes in cognition. Future events should continue to reduce uncertainties of aging and strengthen connections between PAHIV, service providers, and researchers to center lived experience and improve care. HIV aging cognition knowledge mobilization event Introduction Cognitive impairment has emerged as a significant concern for Canada’s aging population, particularly among people aging with human immunodeficiency virus (PAHIV). 1 In Canada, nearly half of people living with HIV are over the age of 50; by 2025, one in six individuals living with HIV are projected to fall into this age category. 2 These demographic shifts underscore the importance of addressing age-related comorbidities, including cognitive issues, among people living with HIV—particularly through knowledge mobilization activities that convene community stakeholders, clinicians, and researchers. 3 , 4 Individuals who initiate treatment early, adhere consistently to combined antiretroviral therapy (cART), and are retained in ongoing HIV care now experience longer life expectancy, on par with peers in the general population. 1 Yet, at the same time, people aging with HIV often experience earlier onset and greater severity of comorbid and geriatric health conditions (e.g., cardiovascular diseases, diabetes, bone and joint disorders, frailty, neurocognitive disorders). 5 , 6 Among these comorbidities, cognitive impairments—particularly those related to HIV-associated neurocognitive disorder (HAND)—pose significant threats to individuals’ quality of life and functional independence. 3 , 5 Extant research has found that PAHIV have: (1) challenges related to cognitive and mental health symptoms (e.g., anxiety, depression, memory issues) while aging with HIV; (2) unmet care needs to address these intersecting concerns, including an absence of tailored services, accessible information, and knowledgeable and affirming care providers; and (3) ensuing (and compounding) experiences of uncertainty about one’s comorbid symptoms, diagnoses, prognoses, and treatment options. 3 , 5 – 7 Further, PAHIV have described care needs as only partially met—including necessities (e.g., food, housing), knowledge, mobility aids and transportation, in-home assistance, and social/community support—due in large part to stigma regarding HIV and aging; interpersonal and medical trauma; and uncertainty about the availability and accessibility of aging-related care and information. 8 Both healthcare providers and PAHIV frequently report uncertainty about their cognitive symptoms and the clinical significance of these concerns, contributing to delays in diagnosis and intervention. 3 , 9 Medical and psychosocial uncertainties, including limited understanding of HIV illness trajectories and comorbidities such as cognitive issues, can significantly impede a person’s health-related decision-making and exacerbate their distress. 6 , 9 Addressing these uncertainties requires community-informed approaches to research and care that prioritize the needs and lived experiences of older adults living with HIV. 7 , 10 Within this context and our team’s existing research on the unmet care needs of people aging with HIV, we organized a knowledge mobilization event focused on aging, HIV, and cognition, to share findings with—and understanding priorities related to knowledge mobilization for—people aging with HIV and cognitive concerns in Canada, their care providers and caregivers, and HIV researchers. Methods We hosted a two-day, hybrid knowledge mobilization event— Unlocking Vitality: The Mind, Brain, and Body Journey of Aging with HIV —that convened multiple groups of interest-holders on February 12–13, 2024. This event was funded by the Canadian Institutes for Health Research (CIHR) as a Café Scientifique, to promote “knowledge-sharing and open, respectful dialogues between the general public and health researchers on health-related issues of public interest,” 11 and organized in collaboration with the Canadian Association for HIV Research, Canadian Association for Global Health, University of Regina, University of Toronto, Dalhousie University, and Realize Canada. Our objective was to create opportunities for researchers, knowledge users, and community members to share knowledge and foster discussion about HIV, aging, and cognition in health research. Interest-holders involved in Unlocking Vitality were people living and aging with HIV, their caregivers, researchers, clinicians, and members of community-based HIV organizations from across Canada. All programming took place online via Zoom video-conferencing, and attendees could participate in each day’s schedule either remotely through their own Zoom account or in-person at the University of Regina, where a Zoom broadcast was set up. The event was hosted in English and French; an interpreter provided live translation across both days. This brief communication presents findings from Unlocking Vitality attendees who completed pre-test and post-test surveys regarding their satisfaction and experience with the event, as well as priorities for future knowledge mobilization activities related to HIV, aging, and cognition. Recruitment To promote the event and recruit for this voluntary study, we circulated information about Unlocking Vitality through e-mail and website communications with the University of Regina, University of Toronto, Dalhousie University, Realize Canada, and HIV community organizations. The Café’s speakers and organizers spread awareness about the event through direct invitations and word-of-mouth communications among stakeholders. Individuals who were interested in the event and the study were encouraged to reach out to the organizers via email. Event agenda and programming Across the two-day Café, 10 invited speakers from Canada, the United States, and the United Kingdom presented on living with HIV; cognition; aging; exercise and health-promoting services, programs and interventions. Speakers included people living with HIV as well as service providers and researchers. The overall program consisted of one keynote address and seven speaker presentations. The keynote speaker presented on MyLifeMyMind (MaVieMonEsprit), a program designed to protect brain health and improve quality of life for individuals aging with HIV. 12 Four presentations on the first day of the event presented research that focused on aging, including the preferences and care needs of people aging with HIV in Ontario; 8 developing a community of practice (i.e., group of stakeholders with shared passions and goals) to advance physical rehabilitation interventions with and for people living with HIV; 13 adapting a cognitive remediation group therapy (CRGT) for virtual delivery; 7 and a health promotion intervention for older Latino adults living with HIV. 14 Meanwhile, the second day focused on cognitive screening and care needs among people aging with HIV; 15 and the service experiences of people aging with HIV and cognitive difficulties and their care providers. 3 Each day opened with a welcome and concluded with a collective discussion about the day’s presentations. Before the first day’s presentations, all attendees were randomly assigned to a breakout room on Zoom to introduce themselves and engage in 15-minute discussions about expectations for the event. Each breakout room had 6–8 attendees and was facilitated by a member of the organizing committee. For the complete Unlocking Vitality program, please see Additional File 1. Data collection and analysis We administered brief (10–15-minute) online surveys via Qualtrics to all individuals who indicated interest in participating in the event and study. We administered surveys at two time points: before the event (pre-test) and immediately afterward (post-test). In the pre-test survey, we asked questions about demographic information, including the person’s affiliation/identity (e.g., person living with HIV, clinical service provider, researcher, policy-maker, caregiver of a person living with HIV), gender identity, sexual orientation, racial identity, and age. The post-test survey inquired about the participant’s role in the Café (e.g., public/audience, organizing member, presenter, facilitator) and utilized open-ended questions (e.g., “What did you like best about the Café?” and “What could do you think could be improved for future Café Scientifiques?”) to solicit qualitative feedback. The survey also invited participants to indicate their satisfaction with the event; whether the event achieved its objective of creating opportunities to share knowledge and increase discussion of HIV, aging, and cognition among researchers, knowledge users, and community members; and whether the event was useful and increased the participant’s knowledge/skills related to managing HIV, aging, and cognition. The goal of this study was to understand attendees’ experiences of and satisfaction with Unlocking Vitality, and their priorities regarding mobilizing knowledge about cognitive health while aging with HIV. To this end, our research team analyzed pre- and post-test survey responses to compute frequencies (e.g., percentages, means) of attendees’ demographics and ratings of event satisfaction. We also utilized thematic content analysis 16 of participants’ qualitative responses on the post-test survey to identify recurring ideas about (1) what was helpful or enjoyable about the event, and (2) what could be improved in future events. Results Fifty-nine people took part in the pre-event survey, and of those individuals, 56 people attended the Café Scientifique event. Subsequently, 27 people completed the post-event survey. Participant Demographics Survey respondents’ (n = 56) ages ranged from 20–79 years, with most between the ages of 40–49 (21%) and 20–29 (21%). Attendees described themselves as people living with HIV (33%), researchers (25%), and community-based service providers (21%), among other roles, including clinical service providers, health system decision-makers, and caregivers of a person living with HIV. Twenty-seven attendees completed the post-test surveys. In this sample, approximately 71% of respondents were members of the public or audience of the event, while the remaining respondents identified as presenters or panellists (11%), organizing members (7%), and facilitators (7%). Participant Satisfaction The majority of individuals who completed the post-test survey reported satisfaction with the event. Seventy percent of respondents (n = 19) shared that they were very satisfied with the event, while 22% (n = 6) were somewhat satisfied, and 4% (n = 1) were neither satisfied nor unsatisfied. Ninety-six percent (n = 26; all respondents except one) felt that the event successfully achieved its objective of creating opportunities for researchers, knowledge users, and the public to discuss health research, share their views, and learn from each other. Most participants (93%) agreed that taking part in Unlocking Vitality increased their understanding of HIV, aging, and cognition, and 88% indicated that they would incorporate the skills and knowledge learned during Unlocking Vitality in current and future initiatives. Meanwhile, 70% of respondents noted that participating in the event improved their capacity—such as knowledge, skills, or abilities—to prevent new HIV infections (and other sexually transmitted and blood-borne infections), as well as their capacity to improve the health and well-being of people affected by HIV. Ninety-three percent of respondents specified that they found the information and comments shared by researchers and knowledge users helpful, and 89% described the knowledge shared by audience members as useful. All respondents expressed interest in attending another Café Scientifique focused on similar topics. Qualitative Findings Responses to open-ended questions on the post-test survey highlighted what participants found helpful or enjoyable about Unlocking Vitality as well as identified priorities for future knowledge mobilization events (see Table 1 for themes and supporting quotes). Specifically, participants noted that they appreciated: (1) the variety of content shared by presenters, including international HIV research, long-term studies, and concrete tips for managing cognitive health while aging with HIV; (2) the event’s accessibility, as it was offered via in-person and virtual platforms, and in English and French; (3) opportunities for audience engagement, such as introductory breakout rooms at the start of the event where attendees were able to connect; and (4) building knowledge about HIV, cognitive health, and options for intervention. In terms of priorities for future events, participants identified (1) increased opportunities for discussion and interaction with presenters and peers; (2) adjustments to event logistics, including presentation length, taking breaks, and schedule-related concerns; and (3) expanding diversity of knowledge mobilization content (e.g., having more speakers who are racialized people and/or peers). Table 1 Qualitative post-test feedback from Unlocking Vitality Café Scientifique attendees Topic Theme Description Supporting Quotes (Responses to the question, “What did you like best about the Café?”) What was helpful and enjoyable about Unlocking Vitality ? Variety and quality of presentation content Clarity and relevance of speaker contributions; range of topics, international/national presenters, interdisciplinary focus “Presentations were thoughtful; provided medium and longer term results; also tips for DIYers” “Research findings, collaboration of stakeholders as they all bring diverse expertise.” “The variety of research shared.” “The variety of topics discussed” “Variety of presentations” “That there were presenters not only from across Canada but also from different countries” Accessibility of event format Virtual and in-person attendance options, language inclusivity (French and English) “I like the proposition to have the translation in French and the possibility of Zoom” “That it was on Zoom so we could access it from across the country.” Opportunities for audience engagement Interactive Q&A sessions, breakout room discussions “I also appreciated the opportunity to connect in small breakout rooms before the session started.” “Interaction with Q&A” Knowledge-building Learning about HIV, cognitive health, and interventions from different perspectives “Hearing lived experience from people living with HIV” “Aging with HIV was not something I had much knowledge of. I appreciated that the content was accessible to those less familiar with the topic.” “It was beneficial to hear [about] early intervention [how] they reduce cognitive impairment.” “I found this event incredibly informative and insightful. In particular, I believe Dr. Jimenez and Dr. Vera's works to be incredibly interesting, as I was able to learn more about work being done with HIV & Aging internationally.” “The knowledge that I learned” What could be improved for future events? More opportunities for discussion and interaction Requests for more time to engage with presenters and peers • “Time better reserved for discussion after a presentation” • “Perhaps more small group discussion groups after each presentation” • “More time for discussion in small groups” • “Shorten presentations, less formal, more on implications, more discussion” • “More interactive media” Event length and logistics Changes to event format, including shortening the length, taking breaks, and keeping to a consistent time • “Length of session/length of speakers presenting” • “I found it to be long… perhaps if it were more like a series” • “I wasn't able to attend both sessions… having it at different times made it more likely that I could attend” • “Definitely stick to breaks. I found it hard to follow when it came to the second presentation of the day” • “Perhaps better time keeping” Expanding knowledge mobilization content Requests for inclusion of different content and presenters across knowledge mobilization activities • “Identifying ways in which to increase participation of service providers and PHAs [people living with HIV] in Knowledge Translation activities. How do we move knowledge gained from the research into action - program development for those aging with HIV, capacity building of service providers, policy change and advocacy.” • “I think having more POC [people of colour] researchers and community members would be a valuable addition” • “Peer presenters” Discussion The Unlocking Vitality Café Scientifique was a hybrid knowledge mobilization event that disseminated emergent research and fostered discussion and questions about the intersecting challenges of aging, cognition, and HIV, among researchers, service providers, and people living with HIV and their caregivers across Canada. Participants had the option of completing pre-event and post-event surveys online; among those who completed the surveys, we found that most attendees expressed satisfaction with the event and felt that they had benefited by gaining new knowledge, skills, or capacities for understanding and managing aging with HIV and cognitive concerns. The pre- and post-event survey findings suggest that targeted knowledge mobilization events can measurably improve public and professional understanding of HIV-associated cognitive comorbidities. These benefits are particularly meaningful given a lack of awareness among HIV care providers and people living with HIV about cognitive comorbidities associated with aging with HIV, including HIV-Associated Neurocognitive Disorder. 7 , 15 , 17 Finally, high satisfaction rates and strong engagement among participants during and after Unlocking Vitality support the effectiveness of community-driven, participatory approaches to knowledge translation. The particular format of this Café Scientifique fostered rich dialogue among researchers, service providers, and people living with HIV and their caregivers; not only was the event organized in collaboration with people living and aging with HIV, it also focused on presenting and sharing knowledge that emerged from community-based participatory research (CBPR). Qualitative feedback from attendees showed that they valued the quality and diversity of presentations, the inclusion of people aging with HIV, and the opportunity to deepen their understanding of early intervention and well-being. However, participants also emphasized the need for more interactive and participatory formats, improved session logistics, and greater inclusion of service providers and racialized community members. Moreover, all survey respondents—regardless of satisfaction with this event—indicated interest in attending another event focused on aging, HIV, and cognition. This project supports a growing body of literature that underscores the importance of knowledge mobilization and community education events among people aging with HIV. 18 , 19 Future initiatives must continue to disseminate knowledge about aging with HIV and cognitive concerns. Limitations Certain limitations should be considered when interpreting findings from Unlocking Vitality . Our sample size was modest, and only a subset of 27 attendees completed both pre- and post-event surveys. Participants also self-opted to attend and to complete surveys, potentially introducing response bias (e.g., pre-existing interest in HIV and aging may lead someone to respond more positively). The evaluation relied on brief self-report surveys and open-text responses, which gathered useful insights but did not offer the depth of qualitative interviews or longer surveys. Lastly, while the event was bilingual, most participants were English-speaking. Future events should aim to increase attendee engagement with the evaluation by surveying a larger sample and incorporating more rigorous mixed-method evaluation approaches. Conclusion Overall, our data suggests that participants experienced a high level of satisfaction with the content of the Unlocking Vitality Café Scientifique event. The majority of survey respondents indicated that the event effectively met its objectives and contributed to an increase in participant knowledge about HIV, aging, and cognition. Future knowledge mobilization events focused on aging, HIV, and cognition are needed to further disseminate findings related to decreasing risk for chronic disease and identifying and managing cognitive health concerns while aging with HIV, and to provide opportunities for people living and aging with HIV to connect with each other. Moreover, future events should involve presenters from diverse backgrounds (e.g., peers, racialized people, care providers). Abbreviations cART: combined antiretroviral therapy CRGT : cognitive remediation group therapy HIV : human immunodeficiency virus HAND: HIV-associated neurocognitive disorder PAHIV: people aging with HIV CBPR: community-based participatory research POC: people of colour CIHR: Canadian Institutes of Health Research Declarations Participants consented to participate in this study. Ethics approval and consent to participate Ethics approval was obtained from the University of Regina’s Research Ethics Board (Protocol #310). Consent for Publication Not applicable. Availability of data and materials Data are available from the corresponding author upon reasonable request. Competing Interests The authors declare that they have no competing interests. Funding Café Scientifique Grant (499308) from the Canadian Institutes of Health Research (CIHR) and workshop funding from the Canadian Association for HIV Research (CAHR). Authors’ Contributions Conceptualization: FIC, KM, RL, ADE; methodology: ADE; formal analysis and investigation: JH, ADE; writing—original draft preparation: JH, ADE; writing—review and editing: FIC, KM, RL, MM; funding acquisition: FIC, ADE; Resources: FIC, KM, RL, ADE, supervision: KM, ADE. Acknowledgements Thank you to all the people living with HIV who contributed to this study and took part in the event. Thank you to Teresa Kern, Carley Moore, and Alexandra Pennell for assistance with the event. References Alford K, Vera JH. Cognitive impairment in people living with HIV in the ART era: a review. Br Med Bull. 2018;127(1):55-68. Sok P. Older persons with HIV in Canada. J Infect Dis Epidemiol. 2019;5(84):1-6. doi:10.23937/2474-3658/1510084 Hui JA, Kern T, Moore C, et al. Cognitive concerns and uncertainty among people aging with HIV: Implications for gerontology. OSF Preprints. 2025. doi:10.31219/osf.io/8ah27. O’Brien KK, Ibáñez-Carrasco F, Solomon P, et al. Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC). AIDS Res Ther. 2020;17(1):21. doi:10.1186/s12981-020-00280-5 Alford, K., & Vera, J. H. (2018). Cognitive impairment in people living with HIV in the ART era: A review. Br Med Bull. 127(1), 55–68. https://doi.org/10.1093/bmb/ldy019 Allavena C, Hanf M, Rey D, et al. Antiretroviral exposure and comorbidities in an aging HIV-infected population: The challenge of geriatric patients. PLoS One. 2018;13(9):e0203895. doi:10.1371/journal.pone.0203895 Eaton AD, Hui J, Muchenje M, et al. Adapting cognitive remediation group therapy online: Focus groups with people aging with HIV. J Int Assoc Provid AIDS Care . 2024;23. doi:10.1177/23259582241242703 Murzin K, Racz E, Behrens DM, et al. "We can hardly even do it nowadays. So, what’s going to happen in 5 years from now, 10 years from now?" The health and community care and support needs and preferences of older people living with HIV in Ontario, Canada: A qualitative study. J Int AIDS Soc. 2022;25:e25978. doi:10.1002/jia2.25978 Rosenfeld D, Ridge D, Lob GV, et al. Vital scientific puzzle or lived uncertainty? Professional and lived approaches to the uncertainties of ageing with HIV. Health Sociol Rev. 2014;23(1):20-32. http://hsr.e-contentmanagement.com/archives/vol/23/issue/1/article/5372/vital-scientific-puzzle-or-lived-uncertainty- Brown MT, Wikiera J, Albarran M, et al. Using community-based participatory research to develop care recommendations for people aging with HIV. Innov Aging. 2023;7(8). doi:10.1093/geroni/igad107 CIHR. (2024, June 3). ICR Café Scientifique . 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How to plan and perform a qualitative study using content analysis. NursingPlus Open. 2016;2:8-14. doi:10.1016/j.npls.2016.01.001 Greene ML, Tan JY, Weiser SD, Christopoulos K, Shiels M, O’Hollaren A, Mureithi E, Meissner L, Havlir D, Gandhi M. Patient and provider perceptions of a comprehensive care program for HIV-positive adults over 50 years of age: the formation of the Golden Compass HIV and aging care program in San Francisco. PLoS One. 2018 Dec 5;13(12):e0208486. Ranuschio B, Bell S, Flatt J, Barnes L, Puno T, Navarro A, Ribeiro A, Sheik-Yosef N, Villalobos E, Wackens J, Liboro RM. Awareness and Knowledge of HIV-Associated Neurocognitive Disorder Among Middle-Aged and Older People Living With HIV/AIDS in Southern Nevada: Implications for HIV/AIDS Community-Based Education Programs. AIDS Education and Prevention. 2024 Apr;36(2):141-54. Liboro, R. M., Shuper, P. A., & Ross, L. E. (2021). Scaling up information sharing on HIV-Associated Neurocognitive Disorder: Raising awareness and knowledge among key stakeholders. SAGE Open , 11 (2), 21582440211016898. Additional Declarations No competing interests reported. Supplementary Files AdditionalFile1UnlockingVitalityProgram.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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Hui","email":"","orcid":"","institution":"University of Regina","correspondingAuthor":false,"prefix":"","firstName":"Jenny","middleName":"A.","lastName":"Hui","suffix":""},{"id":492872023,"identity":"af9b6353-cb9c-4e43-8662-52b761e491cc","order_by":1,"name":"Francisco Ibáñez-Carrasco","email":"","orcid":"","institution":"University of Toronto","correspondingAuthor":false,"prefix":"","firstName":"Francisco","middleName":"","lastName":"Ibáñez-Carrasco","suffix":""},{"id":492872026,"identity":"b8737313-e832-40f3-be58-61b568c1a250","order_by":2,"name":"Kate Murzin","email":"","orcid":"","institution":"Realize","correspondingAuthor":false,"prefix":"","firstName":"Kate","middleName":"","lastName":"Murzin","suffix":""},{"id":492872027,"identity":"f9f78ace-6f6a-40c1-8c9d-972f91d79629","order_by":3,"name":"Rachel Landy","email":"","orcid":"","institution":"Dalhousie University","correspondingAuthor":false,"prefix":"","firstName":"Rachel","middleName":"","lastName":"Landy","suffix":""},{"id":492872029,"identity":"f7b028a2-02f9-4b95-8420-f19a95f4ba9d","order_by":4,"name":"Marvelous Muchenje","email":"","orcid":"","institution":"University of Regina","correspondingAuthor":false,"prefix":"","firstName":"Marvelous","middleName":"","lastName":"Muchenje","suffix":""},{"id":492872030,"identity":"5f73ff9a-65f0-4145-aba4-8e1c2573e10b","order_by":5,"name":"Andrew D. Eaton","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAwUlEQVRIiWNgGAWjYFCCBDApx8/A2ACkmYnUcoCBwViygVQtiRsOgHlEaOFvTz74+UPFHcbNN5IbPzBUWCc2ENIiceZZssSBM8+YzW4kNkswnEknrIXhRo6BxMG2w2xALW0MjG2HCWuRv5H/+QdQC4/xDJCWf0RoMbiRwwayRcJAAqSlgQgthmeemVmcOXPYQOLMw2aJhGPpxgS1yB1PfnyjouJwfX97+sMPH2qsZQlqQQUJpCkfBaNgFIyCUYALAACyckZWBnXEfAAAAABJRU5ErkJggg==","orcid":"","institution":"University of Illinois Chicago","correspondingAuthor":true,"prefix":"","firstName":"Andrew","middleName":"D.","lastName":"Eaton","suffix":""}],"badges":[],"createdAt":"2025-07-28 20:53:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7237174/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7237174/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":88288362,"identity":"09a5e744-4bf5-471a-b893-b67492915461","added_by":"auto","created_at":"2025-08-05 01:16:33","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":750643,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7237174/v1/fe07e7cc-389c-4b79-b04c-125c1ab5b1c2.pdf"},{"id":88226485,"identity":"4663af1c-f853-4a69-96a5-81d49a5a432c","added_by":"auto","created_at":"2025-08-04 08:40:28","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":24395,"visible":true,"origin":"","legend":"","description":"","filename":"AdditionalFile1UnlockingVitalityProgram.docx","url":"https://assets-eu.researchsquare.com/files/rs-7237174/v1/f46bfb841a951caf95a988c7.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Mobilizing knowledge on cognitive aging with HIV","fulltext":[{"header":"Introduction","content":"\u003cp\u003eCognitive impairment has emerged as a significant concern for Canada’s aging population, particularly among people aging with human immunodeficiency virus (PAHIV).\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e In Canada, nearly half of people living with HIV are over the age of 50; by 2025, one in six individuals living with HIV are projected to fall into this age category.\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e These demographic shifts underscore the importance of addressing age-related comorbidities, including cognitive issues, among people living with HIV—particularly through knowledge mobilization activities that convene community stakeholders, clinicians, and researchers.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e,\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eIndividuals who initiate treatment early, adhere consistently to combined antiretroviral therapy (cART), and are retained in ongoing HIV care now experience longer life expectancy, on par with peers in the general population.\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e Yet, at the same time, people aging with HIV often experience earlier onset and greater severity of comorbid and geriatric health conditions (e.g., cardiovascular diseases, diabetes, bone and joint disorders, frailty, neurocognitive disorders).\u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e,\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e Among these comorbidities, cognitive impairments—particularly those related to \u003cem\u003eHIV-associated neurocognitive disorder\u003c/em\u003e (HAND)—pose significant threats to individuals’ quality of life and functional independence.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e,\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e Extant research has found that PAHIV have: (1) challenges related to cognitive and mental health symptoms (e.g., anxiety, depression, memory issues) while aging with HIV; (2) unmet care needs to address these intersecting concerns, including an absence of tailored services, accessible information, and knowledgeable and affirming care providers; and (3) ensuing (and compounding) experiences of \u003cem\u003euncertainty\u003c/em\u003e about one’s comorbid symptoms, diagnoses, prognoses, and treatment options.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e,\u003cspan additionalcitationids=\"CR6\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e–\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e Further, PAHIV have described care needs as only partially met—including necessities (e.g., food, housing), knowledge, mobility aids and transportation, in-home assistance, and social/community support—due in large part to stigma regarding HIV and aging; interpersonal and medical trauma; and uncertainty about the availability and accessibility of aging-related care and information.\u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eBoth healthcare providers and PAHIV frequently report \u003cem\u003euncertainty\u003c/em\u003e about their cognitive symptoms and the clinical significance of these concerns, contributing to delays in diagnosis and intervention.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e,\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e Medical and psychosocial uncertainties, including limited understanding of HIV illness trajectories and comorbidities such as cognitive issues, can significantly impede a person’s health-related decision-making and exacerbate their distress.\u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e,\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e Addressing these uncertainties requires community-informed approaches to research and care that prioritize the needs and lived experiences of older adults living with HIV.\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e,\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e Within this context and our team’s existing research on the unmet care needs of people aging with HIV, we organized a knowledge mobilization event focused on aging, HIV, and cognition, to share findings with—and understanding priorities related to knowledge mobilization for—people aging with HIV and cognitive concerns in Canada, their care providers and caregivers, and HIV researchers.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eWe hosted a two-day, hybrid knowledge mobilization event—\u003cem\u003eUnlocking Vitality: The Mind, Brain, and Body Journey of Aging with HIV\u003c/em\u003e—that convened multiple groups of interest-holders on February 12–13, 2024. This event was funded by the Canadian Institutes for Health Research (CIHR) as a Café Scientifique, to promote “knowledge-sharing and open, respectful dialogues between the general public and health researchers on health-related issues of public interest,”\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e and organized in collaboration with the Canadian Association for HIV Research, Canadian Association for Global Health, University of Regina, University of Toronto, Dalhousie University, and Realize Canada. Our objective was to create opportunities for researchers, knowledge users, and community members to share knowledge and foster discussion about HIV, aging, and cognition in health research. Interest-holders involved in \u003cem\u003eUnlocking Vitality\u003c/em\u003e were people living and aging with HIV, their caregivers, researchers, clinicians, and members of community-based HIV organizations from across Canada. All programming took place online via Zoom video-conferencing, and attendees could participate in each day’s schedule either remotely through their own Zoom account or in-person at the University of Regina, where a Zoom broadcast was set up. The event was hosted in English and French; an interpreter provided live translation across both days.\u003c/p\u003e\u003cp\u003eThis brief communication presents findings from \u003cem\u003eUnlocking Vitality\u003c/em\u003e attendees who completed pre-test and post-test surveys regarding their satisfaction and experience with the event, as well as priorities for future knowledge mobilization activities related to HIV, aging, and cognition.\u003c/p\u003e\u003cp\u003e\u003cb\u003eRecruitment\u003c/b\u003e\u003c/p\u003e\u003cp\u003eTo promote the event and recruit for this voluntary study, we circulated information about \u003cem\u003eUnlocking Vitality\u003c/em\u003e through e-mail and website communications with the University of Regina, University of Toronto, Dalhousie University, Realize Canada, and HIV community organizations. The Café’s speakers and organizers spread awareness about the event through direct invitations and word-of-mouth communications among stakeholders. Individuals who were interested in the event and the study were encouraged to reach out to the organizers via email.\u003c/p\u003e\u003cp\u003e\u003cb\u003eEvent agenda and programming\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAcross the two-day Café, 10 invited speakers from Canada, the United States, and the United Kingdom presented on living with HIV; cognition; aging; exercise and health-promoting services, programs and interventions. Speakers included people living with HIV as well as service providers and researchers. The overall program consisted of one keynote address and seven speaker presentations. The keynote speaker presented on MyLifeMyMind (MaVieMonEsprit), a program designed to protect brain health and improve quality of life for individuals aging with HIV.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e Four presentations on the first day of the event presented research that focused on aging, including the preferences and care needs of people aging with HIV in Ontario;\u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e developing a community of practice (i.e., group of stakeholders with shared passions and goals) to advance physical rehabilitation interventions with and for people living with HIV;\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e adapting a cognitive remediation group therapy (CRGT) for virtual delivery;\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e and a health promotion intervention for older Latino adults living with HIV.\u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e Meanwhile, the second day focused on cognitive screening and care needs among people aging with HIV;\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e and the service experiences of people aging with HIV and cognitive difficulties and their care providers.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eEach day opened with a welcome and concluded with a collective discussion about the day’s presentations. Before the first day’s presentations, all attendees were randomly assigned to a breakout room on Zoom to introduce themselves and engage in 15-minute discussions about expectations for the event. Each breakout room had 6–8 attendees and was facilitated by a member of the organizing committee. For the complete \u003cem\u003eUnlocking Vitality\u003c/em\u003e program, please see Additional File 1.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData collection and analysis\u003c/b\u003e\u003c/p\u003e\u003cp\u003eWe administered brief (10–15-minute) online surveys via Qualtrics to all individuals who indicated interest in participating in the event and study. We administered surveys at two time points: before the event (pre-test) and immediately afterward (post-test). In the pre-test survey, we asked questions about demographic information, including the person’s affiliation/identity (e.g., person living with HIV, clinical service provider, researcher, policy-maker, caregiver of a person living with HIV), gender identity, sexual orientation, racial identity, and age. The post-test survey inquired about the participant’s role in the Café (e.g., public/audience, organizing member, presenter, facilitator) and utilized open-ended questions (e.g., “What did you like best about the Café?” and “What could do you think could be improved for future Café Scientifiques?”) to solicit qualitative feedback. The survey also invited participants to indicate their satisfaction with the event; whether the event achieved its objective of creating opportunities to share knowledge and increase discussion of HIV, aging, and cognition among researchers, knowledge users, and community members; and whether the event was useful and increased the participant’s knowledge/skills related to managing HIV, aging, and cognition.\u003c/p\u003e\u003cp\u003eThe goal of this study was to understand attendees’ experiences of and satisfaction with Unlocking Vitality, and their priorities regarding mobilizing knowledge about cognitive health while aging with HIV. To this end, our research team analyzed pre- and post-test survey responses to compute frequencies (e.g., percentages, means) of attendees’ demographics and ratings of event satisfaction. We also utilized thematic content analysis\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e of participants’ qualitative responses on the post-test survey to identify recurring ideas about (1) what was helpful or enjoyable about the event, and (2) what could be improved in future events.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eFifty-nine people took part in the pre-event survey, and of those individuals, 56 people attended the Caf\u0026eacute; Scientifique event. Subsequently, 27 people completed the post-event survey.\u003c/p\u003e\u003cp\u003e\u003cb\u003eParticipant Demographics\u003c/b\u003e\u003c/p\u003e\u003cp\u003eSurvey respondents\u0026rsquo; (n\u0026thinsp;=\u0026thinsp;56) ages ranged from 20\u0026ndash;79 years, with most between the ages of 40\u0026ndash;49 (21%) and 20\u0026ndash;29 (21%). Attendees described themselves as people living with HIV (33%), researchers (25%), and community-based service providers (21%), among other roles, including clinical service providers, health system decision-makers, and caregivers of a person living with HIV.\u003c/p\u003e\u003cp\u003eTwenty-seven attendees completed the post-test surveys. In this sample, approximately 71% of respondents were members of the public or audience of the event, while the remaining respondents identified as presenters or panellists (11%), organizing members (7%), and facilitators (7%).\u003c/p\u003e\u003cp\u003e\u003cb\u003eParticipant Satisfaction\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe majority of individuals who completed the post-test survey reported satisfaction with the event. Seventy percent of respondents (n\u0026thinsp;=\u0026thinsp;19) shared that they were very satisfied with the event, while 22% (n\u0026thinsp;=\u0026thinsp;6) were somewhat satisfied, and 4% (n\u0026thinsp;=\u0026thinsp;1) were neither satisfied nor unsatisfied. Ninety-six percent (n\u0026thinsp;=\u0026thinsp;26; all respondents except one) felt that the event successfully achieved its objective of creating opportunities for researchers, knowledge users, and the public to discuss health research, share their views, and learn from each other. Most participants (93%) agreed that taking part in \u003cem\u003eUnlocking Vitality\u003c/em\u003e increased their understanding of HIV, aging, and cognition, and 88% indicated that they would incorporate the skills and knowledge learned during \u003cem\u003eUnlocking Vitality\u003c/em\u003e in current and future initiatives. Meanwhile, 70% of respondents noted that participating in the event improved their capacity\u0026mdash;such as knowledge, skills, or abilities\u0026mdash;to prevent new HIV infections (and other sexually transmitted and blood-borne infections), as well as their capacity to improve the health and well-being of people affected by HIV. Ninety-three percent of respondents specified that they found the information and comments shared by researchers and knowledge users helpful, and 89% described the knowledge shared by audience members as useful. All respondents expressed interest in attending another Caf\u0026eacute; Scientifique focused on similar topics.\u003c/p\u003e\u003cp\u003e\u003cb\u003eQualitative Findings\u003c/b\u003e\u003c/p\u003e\u003cp\u003eResponses to open-ended questions on the post-test survey highlighted what participants found helpful or enjoyable about \u003cem\u003eUnlocking Vitality\u003c/em\u003e as well as identified priorities for future knowledge mobilization events (see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for themes and supporting quotes). Specifically, participants noted that they appreciated: (1) the variety of content shared by presenters, including international HIV research, long-term studies, and concrete tips for managing cognitive health while aging with HIV; (2) the event\u0026rsquo;s accessibility, as it was offered via in-person and virtual platforms, and in English and French; (3) opportunities for audience engagement, such as introductory breakout rooms at the start of the event where attendees were able to connect; and (4) building knowledge about HIV, cognitive health, and options for intervention. In terms of priorities for future events, participants identified (1) increased opportunities for discussion and interaction with presenters and peers; (2) adjustments to event logistics, including presentation length, taking breaks, and schedule-related concerns; and (3) expanding diversity of knowledge mobilization content (e.g., having more speakers who are racialized people and/or peers).\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eQualitative post-test feedback from \u003cem\u003eUnlocking Vitality\u003c/em\u003e Caf\u0026eacute; Scientifique attendees\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTopic\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTheme\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDescription\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSupporting Quotes\u003c/p\u003e\u003cp\u003e(Responses to the question, \u0026ldquo;What did you like best about the Caf\u0026eacute;?\u0026rdquo;)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e\u003cp\u003e\u003cb\u003eWhat was helpful and enjoyable about\u003c/b\u003e \u003cb\u003eUnlocking Vitality\u003c/b\u003e\u003cb\u003e?\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eVariety and quality of presentation content\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClarity and relevance of speaker contributions; range of topics, international/national presenters, interdisciplinary focus\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Presentations were thoughtful; provided medium and longer term results; also tips for DIYers\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Research findings, collaboration of stakeholders as they all bring diverse expertise.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;The variety of research shared.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;The variety of topics discussed\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Variety of presentations\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;That there were presenters not only from across Canada but also from different countries\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eAccessibility of event format\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eVirtual and in-person attendance options, language inclusivity (French and English)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;I like the proposition to have the translation in French and the possibility of Zoom\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;That it was on Zoom so we could access it from across the country.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eOpportunities for audience engagement\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInteractive Q\u0026amp;A sessions, breakout room discussions\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;I also appreciated the opportunity to connect in small breakout rooms before the session started.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Interaction with Q\u0026amp;A\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eKnowledge-building\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eLearning about HIV, cognitive health, and interventions from different perspectives\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Hearing lived experience from people living with HIV\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Aging with HIV was not something I had much knowledge of. I appreciated that the content was accessible to those less familiar with the topic.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;It was beneficial to hear [about] early intervention [how] they reduce cognitive impairment.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;I found this event incredibly informative and insightful. In particular, I believe Dr. Jimenez and Dr. Vera's works to be incredibly interesting, as I was able to learn more about work being done with HIV \u0026amp; Aging internationally.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;The knowledge that I learned\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003e\u003cb\u003eWhat could be improved for future events?\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eMore opportunities for discussion and interaction\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eRequests for more time to engage with presenters and peers\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Time better reserved for discussion after a presentation\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Perhaps more small group discussion groups after each presentation\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;More time for discussion in small groups\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Shorten presentations, less formal, more on implications, more discussion\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;More interactive media\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eEvent length and logistics\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eChanges to event format, including shortening the length, taking breaks, and keeping to a consistent time\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Length of session/length of speakers presenting\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;I found it to be long\u0026hellip; perhaps if it were more like a series\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;I wasn't able to attend both sessions\u0026hellip; having it at different times made it more likely that I could attend\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Definitely stick to breaks. I found it hard to follow when it came to the second presentation of the day\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Perhaps better time keeping\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eExpanding knowledge mobilization content\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eRequests for inclusion of different content and presenters across knowledge mobilization activities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Identifying ways in which to increase participation of service providers and PHAs [people living with HIV] in Knowledge Translation activities. How do we move knowledge gained from the research into action - program development for those aging with HIV, capacity building of service providers, policy change and advocacy.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;I think having more POC [people of colour] researchers and community members would be a valuable addition\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026bull; \u0026ldquo;Peer presenters\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe \u003cem\u003eUnlocking Vitality\u003c/em\u003e Caf\u0026eacute; Scientifique was a hybrid knowledge mobilization event that disseminated emergent research and fostered discussion and questions about the intersecting challenges of aging, cognition, and HIV, among researchers, service providers, and people living with HIV and their caregivers across Canada. Participants had the option of completing pre-event and post-event surveys online; among those who completed the surveys, we found that most attendees expressed satisfaction with the event and felt that they had benefited by gaining new knowledge, skills, or capacities for understanding and managing aging with HIV and cognitive concerns.\u003c/p\u003e\u003cp\u003eThe pre- and post-event survey findings suggest that targeted knowledge mobilization events can measurably improve public and professional understanding of HIV-associated cognitive comorbidities. These benefits are particularly meaningful given a lack of awareness among HIV care providers and people living with HIV about cognitive comorbidities associated with aging with HIV, including HIV-Associated Neurocognitive Disorder.\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e,\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e,\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e Finally, high satisfaction rates and strong engagement among participants during and after \u003cem\u003eUnlocking Vitality\u003c/em\u003e support the effectiveness of community-driven, participatory approaches to knowledge translation. The particular format of this Caf\u0026eacute; Scientifique fostered rich dialogue among researchers, service providers, and people living with HIV and their caregivers; not only was the event organized in collaboration with people living and aging with HIV, it also focused on presenting and sharing knowledge that emerged from community-based participatory research (CBPR). Qualitative feedback from attendees showed that they valued the quality and diversity of presentations, the inclusion of people aging with HIV, and the opportunity to deepen their understanding of early intervention and well-being. However, participants also emphasized the need for more interactive and participatory formats, improved session logistics, and greater inclusion of service providers and racialized community members. Moreover, all survey respondents\u0026mdash;regardless of satisfaction with this event\u0026mdash;indicated interest in attending another event focused on aging, HIV, and cognition. This project supports a growing body of literature that underscores the importance of knowledge mobilization and community education events among people aging with HIV.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e,\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e Future initiatives must continue to disseminate knowledge about aging with HIV and cognitive concerns.\u003c/p\u003e\u003cp\u003e\u003cb\u003eLimitations\u003c/b\u003e\u003c/p\u003e\u003cp\u003eCertain limitations should be considered when interpreting findings from \u003cem\u003eUnlocking Vitality\u003c/em\u003e. Our sample size was modest, and only a subset of 27 attendees completed both pre- and post-event surveys. Participants also self-opted to attend and to complete surveys, potentially introducing response bias (e.g., pre-existing interest in HIV and aging may lead someone to respond more positively). The evaluation relied on brief self-report surveys and open-text responses, which gathered useful insights but did not offer the depth of qualitative interviews or longer surveys. Lastly, while the event was bilingual, most participants were English-speaking. Future events should aim to increase attendee engagement with the evaluation by surveying a larger sample and incorporating more rigorous mixed-method evaluation approaches.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOverall, our data suggests that participants experienced a high level of satisfaction with the content of the \u003cem\u003eUnlocking Vitality\u003c/em\u003e Caf\u0026eacute; Scientifique event. The majority of survey respondents indicated that the event effectively met its objectives and contributed to an increase in participant knowledge about HIV, aging, and cognition. Future knowledge mobilization events focused on aging, HIV, and cognition are needed to further disseminate findings related to decreasing risk for chronic disease and identifying and managing cognitive health concerns while aging with HIV, and to provide opportunities for people living and aging with HIV to connect with each other. Moreover, future events should involve presenters from diverse backgrounds (e.g., peers, racialized people, care providers).\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ecART: combined antiretroviral therapy\u003c/p\u003e\n\u003cp\u003eCRGT\u003cem\u003e:\u0026nbsp;\u003c/em\u003ecognitive remediation group therapy\u003c/p\u003e\n\u003cp\u003eHIV\u003cem\u003e:\u0026nbsp;\u003c/em\u003ehuman immunodeficiency virus\u003c/p\u003e\n\u003cp\u003eHAND:\u003cem\u003e\u0026nbsp;\u003c/em\u003eHIV-associated neurocognitive disorder\u003c/p\u003e\n\u003cp\u003ePAHIV: people aging with HIV\u003c/p\u003e\n\u003cp\u003eCBPR: community-based participatory research\u003c/p\u003e\n\u003cp\u003ePOC: people of colour\u003c/p\u003e\n\u003cp\u003eCIHR: Canadian Institutes of Health Research\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cspan\u003eParticipants consented to participate in this study.\u003c/span\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthics approval was obtained from the University of Regina\u0026rsquo;s Research Ethics Board (Protocol #310).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCafé Scientifique Grant (499308) from the Canadian Institutes of Health Research (CIHR) and workshop funding from the Canadian Association for HIV Research (CAHR).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; Contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConceptualization: FIC, KM, RL, ADE; methodology: ADE; formal analysis and investigation: JH, ADE; writing\u0026mdash;original draft preparation: JH, ADE; writing\u0026mdash;review and editing: FIC, KM, RL, MM; funding acquisition: FIC, ADE; Resources: FIC, KM, RL, ADE, supervision: KM, ADE.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThank you to all the people living with HIV who contributed to this study and took part in the event. Thank you to Teresa Kern, Carley Moore, and Alexandra Pennell for assistance with the event.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eAlford K, Vera JH. Cognitive impairment in people living with HIV in the ART era: a review. \u003cem\u003eBr Med Bull.\u0026nbsp;\u003c/em\u003e2018;127(1):55-68.\u003c/li\u003e\n \u003cli\u003eSok P. Older persons with HIV in Canada. \u003cem\u003eJ Infect Dis Epidemiol.\u003c/em\u003e 2019;5(84):1-6. doi:10.23937/2474-3658/1510084\u003c/li\u003e\n \u003cli\u003eHui JA, Kern T, Moore C, et al. Cognitive concerns and uncertainty among people aging with HIV: Implications for gerontology. \u003cem\u003eOSF Preprints.\u003c/em\u003e 2025. doi:10.31219/osf.io/8ah27.\u003c/li\u003e\n \u003cli\u003eO\u0026rsquo;Brien KK, Ib\u0026aacute;\u0026ntilde;ez-Carrasco F, Solomon P, et al. Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC). \u003cem\u003eAIDS Res Ther.\u0026nbsp;\u003c/em\u003e2020;17(1):21. doi:10.1186/s12981-020-00280-5\u003c/li\u003e\n \u003cli\u003eAlford, K., \u0026amp; Vera, J. H. (2018). Cognitive impairment in people living with HIV in the ART era: A review. \u003cem\u003eBr Med Bull.\u003c/em\u003e127(1), 55\u0026ndash;68. https://doi.org/10.1093/bmb/ldy019\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eAllavena C, Hanf M, Rey D, et al. Antiretroviral exposure and comorbidities in an aging HIV-infected population: The challenge of geriatric patients. \u003cem\u003ePLoS One.\u003c/em\u003e 2018;13(9):e0203895. doi:10.1371/journal.pone.0203895\u003c/li\u003e\n \u003cli\u003eEaton AD, Hui J, Muchenje M, et al. Adapting cognitive remediation group therapy online: Focus groups with people aging with HIV. \u003cem\u003eJ Int Assoc Provid AIDS Care\u003c/em\u003e. 2024;23. doi:10.1177/23259582241242703\u003c/li\u003e\n \u003cli\u003eMurzin K, Racz E, Behrens DM, et al. \u0026quot;We can hardly even do it nowadays. So, what\u0026rsquo;s going to happen in 5 years from now, 10 years from now?\u0026quot; The health and community care and support needs and preferences of older people living with HIV in Ontario, Canada: A qualitative study. \u003cem\u003eJ Int AIDS Soc.\u003c/em\u003e 2022;25:e25978. doi:10.1002/jia2.25978\u003c/li\u003e\n \u003cli\u003eRosenfeld D, Ridge D, Lob GV, et al. Vital scientific puzzle or lived uncertainty? Professional and lived approaches to the uncertainties of ageing with HIV. \u003cem\u003eHealth Sociol Rev.\u0026nbsp;\u003c/em\u003e2014;23(1):20-32. http://hsr.e-contentmanagement.com/archives/vol/23/issue/1/article/5372/vital-scientific-puzzle-or-lived-uncertainty-\u003c/li\u003e\n \u003cli\u003eBrown MT, Wikiera J, Albarran M, et al. Using community-based participatory research to develop care recommendations for people aging with HIV. \u003cem\u003eInnov Aging.\u003c/em\u003e 2023;7(8). doi:10.1093/geroni/igad107\u003c/li\u003e\n \u003cli\u003eCIHR. (2024, June 3). \u003cem\u003eICR Caf\u0026eacute; Scientifique\u003c/em\u003e. Canadian Institutes of Health Research | Government of Canada. https://cihr-irsc.gc.ca/e/53133.html\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eMyLifeMyMind: improving quality of life and brain health in persons aging with HIV. https://mylifemymind.org\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eIb\u0026aacute;\u0026ntilde;ez-Carrasco F, Jiancaro T, Torres B, et al. 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How to plan and perform a qualitative study using content analysis. \u003cem\u003eNursingPlus Open.\u003c/em\u003e 2016;2:8-14. doi:10.1016/j.npls.2016.01.001\u003c/li\u003e\n \u003cli\u003eGreene ML, Tan JY, Weiser SD, Christopoulos K, Shiels M, O\u0026rsquo;Hollaren A, Mureithi E, Meissner L, Havlir D, Gandhi M. Patient and provider perceptions of a comprehensive care program for HIV-positive adults over 50 years of age: the formation of the Golden Compass HIV and aging care program in San Francisco. PLoS One. 2018 Dec 5;13(12):e0208486.\u003c/li\u003e\n \u003cli\u003eRanuschio B, Bell S, Flatt J, Barnes L, Puno T, Navarro A, Ribeiro A, Sheik-Yosef N, Villalobos E, Wackens J, Liboro RM. Awareness and Knowledge of HIV-Associated Neurocognitive Disorder Among Middle-Aged and Older People Living With HIV/AIDS in Southern Nevada: Implications for HIV/AIDS Community-Based Education Programs. AIDS Education and Prevention. 2024 Apr;36(2):141-54.\u003c/li\u003e\n \u003cli\u003eLiboro, R. M., Shuper, P. A., \u0026amp; Ross, L. E. (2021). Scaling up information sharing on HIV-Associated Neurocognitive Disorder: Raising awareness and knowledge among key stakeholders. \u003cem\u003eSAGE Open\u003c/em\u003e, \u003cem\u003e11\u003c/em\u003e(2), 21582440211016898.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"HIV, aging, cognition, knowledge mobilization event","lastPublishedDoi":"10.21203/rs.3.rs-7237174/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7237174/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eCognitive impairment is a growing concern for people aging with HIV (PAHIV), yet awareness of cognitive changes and management strategies remains low among PAHIV and healthcare providers. 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