Objectives Scholars have increasingly recognized the crucial role that empathy plays as informal caregivers provide unpaid care to their older family and friends (i.e., care recipients). Yet, the existing literature exhibits substantial variability in study approaches and results, which limits the extent to which this literature can inform interventions intended to benefit informal caregivers. We sought to address this critical gap by synthesizing research that examined how caregivers' and care recipients' empathy were associated with caregivers' psychological health.Methods We conducted a literature search using PubMed, PsycInfo, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE, and Scopus databases and systematically reviewed 21 peer-reviewed studies that were eligible for the current study. We utilized a multilevel random-effects approach and meta-analyzed 17 studies focused on caregivers' negative psychological outcomes (e.g., depressive symptoms, anxiety, burden, burnout, stress).Results We observed small, nonsignificant associations linking caregivers' emotional and cognitive empathy to their negative psychological outcomes. Yet, there were moderate, significant associations between greater emotional and cognitive empathy in care recipients and less negative psychological outcomes in caregivers. We also ran sensitivity tests for different aspects of emotional and cognitive empathy.Discussion This review reveals considerable heterogeneity in extant research but still offers robust evidence linking care recipients' empathy to caregivers' psychological health. Findings highlight the importance of engaging care recipients in interventions targeting caregivers and call for more consistent and nuanced investigations of empathy in caregiving.

OBJECTIVE:The population of women ages 50 years and older living with HIV is increasing. Yet, little is known about the care networks that older women living with HIV (OWLH) use to manage their health. The goal of this study was to explore the caregiving and care receiving relationships among OWLH and how these relationships impact HIV management. METHODS:OWLH aged 50 years and older were recruited from clinics and community-based organizations across the U.S. We conducted semi-structured, in-depth phone interviews and performed content and thematic analysis on transcripts. RESULTS:Participants (N = 23) were on average 60 years old and had been living with HIV for an average of 23.7 years. Participants 1) relied on diverse care networks; 2) were caregivers for grandchildren and parents; 3) had pride and joy in being caregivers; and 4) were highly proactive in their own HIV management. Care networks promoted self-love and acceptance. However, concerns about aging with HIV were still highly prevalent. CONCLUSION:Being a caregiver and care recipient are sources of meaning and strength to help OWLH manage HIV. Public health programs should consider engaging both OWLH and their care networks in healthcare discussions and educational efforts.

Abstract Internalized HIV stigma refers to the negative beliefs, feelings, and attitudes that people living with HIV (PLHIV) adopt about themselves due to societal HIV stigma. Internalized HIV stigma negatively impacts mental health. Up to 55% of PLWH experience HIV-associated neurocognitive disorders. This study examines longitudinal associations between internalized HIV stigma and cognition among women aged 50+ living with HIV in the historic Women’s Interagency HIV Study. Internalized HIV stigma was measured between 2013-2015 using the negative self-image sub-scale of the HIV stigma scale. Seven cognitive domains (executive function, processing speed, attention/working memory, verbal learning, verbal memory, verbal fluency, and fine motor function) were assessed using a validated cognitive battery at baseline (2013-2017) and 2-3 years later. Demographically adjusted T-scores were calculated for each domain with higher scores indicating better performance. A global cognition score was computed by averaging the domain-specific scores. Linear regression models adjusted for age, race, ethnicity, cognition at baseline, average annual income, undetectable viral load, smoking history, recent non-prescription drug use, menopausal status, depression, and alcohol use. Participants’ (N=760) mean age was 54 years; 61% identified as Black/African American; 13% were Hispanic; and 54% had an annual income below $12,000. The mean HIV stigma score was 1.78 (SD=0.64). Higher internalized HIV stigma was associated with poorer global cognitive function (B= -0.68, p< 0.05), verbal learning (B= -1.42, p< 0.05), and verbal memory (B= -1.40 p< 0.05) at time 2. Findings suggest assessing and monitoring HIV stigma could have beneficial cognitive effects for older women aging with HIV.

The authors have no conflicts of interest to disclose.

OBJECTIVES:People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD's neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD's difficulties in emotion regulation and whether CP's emotion regulation relates to the PwD's neuropsychiatric symptoms, potentially revealing bias or interpersonal effects. METHOD:We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation. RESULTS:Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP's difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD's self-reported difficulties in emotion regulation. CONCLUSION:PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD's emotion regulation capability and not be biased by CP's difficulties in emotion regulation.

Abstract Research has demonstrated that greater childhood adversity is associated with poor mental health in older adult family caregivers. Yet, it is unknown whether early parent-child relationship quality is more specifically associated with adult children’s caregiver burden and perceived support from their parents living with cognitive impairment. We examined associations between early life parent-child relationship quality, current caregiver burden, and adult children’s perceived support from their parents, among adult children of parents living with early-stage dementia. Adult children of parents living with cognitive impairment (n=144, m=47.53, sd=11.2, Non-Hispanic=92%, White=72%) completed the following self-report measures: Parental Bonding Inventory, Zarit Burden Interview, and Perceived Partner Responsiveness Scale. Multiple linear regression models revealed children who identified more care, less overprotection, and optimal parenting in their early parent-child relationships reported greater current perceived support from their parents. However, there was no statistically significant association found between early parent-child relationship quality and caregiver burden. Our findings indicate that while early positive relationship quality may be indicative of adult children’s future perceptions of support from their parents with early-stage dementia, it may not buffer against perceptions of caregiver burden. Overall, results highlight that early parent-child relationship quality may have consequences for caregiving relationships in later life. Future research is needed to explore mechanisms of early parent-child relationship quality and perceptions of support that are associated with caregiver outcomes.

INTRODUCTION:The population of women aged 50 years and older living with HIV is increasing. Older women face unique challenges in the prevention and management of HIV; however, they are often under engaged in HIV/AIDS research. One such challenge is gender-based stigma, which can be manifested through harmful gendered stereotypes, discrimination, prejudice, and sexism that could potentially hinder HIV care engagement among this population. We propose a scoping review to identify and synthesize evidence pertaining to how experiences of gender-based stigma impacts HIV prevention and care among older women.MATERIALS AND METHODS:We will use the framework by Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) to conduct this scoping review. We will search MEDLINE/PubMed, Web of Science, PsycINFO, CINAHL and Scopus for empirical literature published between January 1981 and the date of search commencement. Supplementary screening will be conducted using backwards citation chaining of the final list of included full-text articles. Two reviewers will independently screen all titles and abstracts for articles that meet the predetermined inclusion criteria. Two reviewers will also screen full-text articles and chart data using a standardized data collection form.RESULTS:We will synthesize the findings through tables, charts, and narrative summaries. We will also identify gaps in the current literature and provide recommendations for future research. Findings will be shared at conferences and submitted to a peer-reviewed publication.DISCUSSION:To our knowledge, this will be the first scoping review to examine gender-based stigma in relation to HIV prevention and care among older women. We anticipate that our results will be of interest to older women living with HIV, healthcare providers, policy makers, and community activists working to improve quality of life and care experiences for older women living with HIV.

Abstract Many older persons living with dementia (PLWD) also live with multiple chronic conditions (MCCs). Care partners of PLWD will increasingly need to make care decisions for PLWD, but the health care priorities of PLWD with MCCs may vary. The Patient Priorities Care Health Priorities Identification Process is an evidenced-based tool to support older adults with MCCs to identify and communicate their health priorities. In this pilot study, we adapted this tool to engage care partners of PLWD as active listeners while the PLWD discussed their healthcare goals and priorities. We recruited dyads consisting of a care partner and a care recipient in the early stages of dementia. We assessed feasibility and acceptability of going through the process together through open-ended questions. Two coders used thematic analysis to examine their responses. Five dyads (N=10) participated in the pilot study. The PLWD ranged in age from 70-83 years and had a range of three to eight chronic conditions. Care partners ranged from 39-78 years of age. The PLWD had no issues completing the process with their care partners present and enjoyed having their care partner present. Care partners valued engaging as active listeners and had a better understanding of the PLWD’s health care priorities. Engagement in this process also helped them recognize that the PLWD is proactive in their own health goals. Involving care partners in a healthcare priorities identification process is a valuable, feasible, and acceptable way to prepare care partners to be care proxies.

Aims: Older adults in affordable senior housing often experience chronic illness and unmet health care needs. This review describes studies reporting the characteristics and primary outcomes of health care interventions for older adults living in affordable senior housing. Design: A scoping review Methods: After a systematic search in three databases, a team of investigators screened 1,284 titles and abstracts and selected 31 records with reports on 28 studies for review. Narrative synthesis was used to describe studies of interventions in senior housing and primary outcomes. Results: Studies typically used observational designs and added clinical staff, such as nurses and social workers, to provide health care interventions in groups (n = 15) or with individuals (n = 13). Outcomes were classified in four groups: wellness, symptom management, health care use, and physical function. A subset of 23 studies (82.1%) reported effective interventions. Impact: Findings identify innovative interventions to promote health in affordable senior housing. & COPY; 2023 Elsevier Inc. All rights reserved.

Abstract There are over 4.2 million older adults (ages 50+ years) living with human immunodeficiency virus (HIV) globally. Older women continue to make up a significant proportion of this population. Advances in antiretroviral therapy treatments have allowed HIV+ individuals to live longer, healthier lives. However, compared to all persons living with HIV, women have lower viral suppression rates and are less likely to be retained in care. While older women living with HIV (WLWH) face unique challenges with HIV prevention and care, such as caregiving responsibilities, gender discrimination, and ageism, there is a dearth of research focusing on their experiences. As the population of older WLWH continues to increase, understanding barriers and facilitators to HIV prevention and care among this population is a public health priority. This symposium will provide insight into psychosocial factors that influence HIV prevention, care, and well-being among older WLWH. Our first presentation highlights a qualitative study identifying sources of strength and concerns about aging with HIV among older women. Our second presentation examines social support networks and interpersonal strain in relation to loneliness among older WLWH. Our third presentation highlights the impact of patient-provider communication regarding HIV/AIDs on sexual health communication between older WLWH and their partners. Our fourth presentation examines mental health vulnerabilities and strengths of older WLWH during the humanitarian crisis in Ukraine. Discussant Dr. Anna Rubtsova will contextualize these findings and offer suggestions for future research to enhance well-being of older women across the continuum of HIV prevention and care.

Abstract There are currently over 100,000 older (ages 50+ years) women living with HIV/AIDs in the United States. Older women living with HIV (OWLH) face unique psychosocial challenges with HIV prevention and care, including intimate partner violence, gender discrimination, ageism, and caregiving responsibilities. These factors can impede self-care and contribute to increased mental, emotional, and physical burdens. Little is known about the resources OWLH draw upon to help manage psychosocial stressors and their perspectives of aging with HIV. This qualitative study identified sources of strength and self-care among OWLH, as well as their concerns about aging with HIV. We recruited participants through HIV clinics and community support groups. We conducted one-on-one, semi-structured in-depth phone interviews with OWLH. Interviews were recorded and transcribed verbatim. Following a Grounded Theory approach, two coders performed open coding then thematic coding. Participants (N = 23) were on average 60 years old (range 51 – 68) and had been living with HIV for an average of 23.7 years. We found that a desire to self-educate, community activism, and engagement with other OWLH reduced participants’ internalized stigma and were sources of empowerment. However, concerns about aging with HIV persists, including pervasive HIV stigma, comorbidities, shrinking caregiver networks, long-term effects of treatment, and lack of HIV research and programs focusing on older women. These findings suggest that while OWLH are empowered agents in their own HIV care journey, structural interventions (e.g., inclusion of older women in HIV trials) are still needed to address the unique concerns of this population.

Objectives: The purpose of the study was to describe unique care needs of people with dementia (PWD) and their caregivers during transitions from skilled nursing facilities (SNF) to home. Design: A qualitative study using focus groups, semistructured interviews, and descriptive qualitative analysis. Setting and Participants: The study was set in one state, in 4 SNFs where staff had experience using a standardized transitional care protocol. The sample included 22 SNF staff, 4 home health nurses, 10 older adults with dementia, and their 10 family caregivers of whom 39 participated in focus groups and/or interviews. Methods: Data collection included 4 focus groups with SNF staff and semistructured interviews with home health nurses, SNF staff, PWD, and their family caregivers. Standardized focus group and interview guides were used to elicit participant perceptions of transitional care. We used the framework analytic approach to qualitative analysis. A steering committee participated in interpretation of findings. Results: Participants described 4 unique care needs: (1) PWD and caregivers may not be ready to fully engage in dementia care planning while in the SNF, (2) caregivers are not prepared to manage dementia symptoms at home, (3) SNF staff have difficulty connecting PWD and caregivers to community supports, and (4) caregivers receive little support to address their own needs. Conclusions and Implications: Based on findings, recommendations are offered for adapting transitional care to address the needs of PWD and their caregivers. Further research is needed (1) to confirm these findings in larger, more diverse samples and (2) to adapt and test interventions to support successful community discharge of PWD and their caregivers. (C) 2022 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Abstract The early stages of dementia can be a time of stress and uncertainty for spouses, yet little attention is paid to positive experiences. It is important to understand whether there are individual differences in emotion regulation that impact the positive affect of the individual and the partner. Drawing from interdependence theory, we hypothesized that one spouse’s greater difficulty regulating emotions would be associated with their spouses lower positive emotions over time. We used self-report data from an intervention study with three assessment points (baseline, two weeks, and three months) of 45 older adult married couples (N=90) where one spouse has early-stage dementia. Both partners completed the Difficulties in Emotion Regulation Scale and the Positive and Negative Affect Scale. Results from the longitudinal actor partner interdependence model showed that when care partners were high in difficulty regulating emotions, their partner’s positive affect decreased (β = -0.343, p <.01), controlling for intervention arm and covariates.

Long-term care (LTC) settings have implemented family visitor restrictions amidst the COVID-19 pandemic that may exacerbate isolation and loneliness among residents,1Cudjoe T.K.M. Kotwal A.A. "Social Distancing" amid a crisis in social isolation and loneliness.J Am Geriatr Soc. 2020; 68: E27-E29Crossref PubMed Scopus (57) Google Scholar,2Eghtesadi M. Breaking social isolation Amidst COVID-19: a viewpoint on improving access to technology in long-term care facilities.J Am Geriatr Soc. 2020; 68: 949-950Crossref PubMed Scopus (49) Google Scholar which have been linked to worse health outcomes such as increased risk for cardiovascular disease and depression.3Courtin E. Knapp M. Social isolation, loneliness and health in old age: a scoping review.Health Soc Care Community. 2017; 25: 799-812Crossref PubMed Scopus (497) Google Scholar In addition, visitor restrictions have been associated with increased stress and anxiety among family members.4Hugelius K. Harada N. Marutani M. Consequences of visiting restrictions during the COVID-19 pandemic: an integrative review.Int J Nurs Stud. 2021; 121: 104000Crossref PubMed Scopus (26) Google Scholar Incorporating communication technology, such as tablets and laptops, for residents to interact virtually with their families has been shown to increase social support and well-being.5Tsai H.H. Tsai Y.F. Wang H.H. et al.Videoconference program enhances social support, loneliness, and depressive status of elderly nursing home residents.Aging Ment Health. 2010; 14: 947-954Crossref PubMed Scopus (101) Google Scholar However, many LTC facilities do not have enough communication technology equipment to support resident needs.3Courtin E. Knapp M. Social isolation, loneliness and health in old age: a scoping review.Health Soc Care Community. 2017; 25: 799-812Crossref PubMed Scopus (497) Google Scholar,6Seifert A. Batsis J.A. Smith A.C. Telemedicine in long-term care facilities during and beyond COVID-19: challenges caused by the digital divide.Front Public Health. 2020; 8: 601595Crossref Scopus (17) Google Scholar Therefore, we implemented a simple intervention at a skilled-nursing setting that increased the quantity of available technology to help staff and residents engage with families and other medical professionals during COVID-19 restrictions. This intervention took place at an urban skilled-nursing home with 69 beds and 174 staff. We conducted a focus group with staff in February 2021 to determine types and quantities of equipment that were needed. Fifteen weeks after the facility received the equipment, we conducted a second focus group and distributed an electronic survey to staff to assess use and satisfaction. This study was deemed exempt by a university institutional review board (#1511016844). A total of 13 staff responded to the survey. Overall, 85% of staff strongly agreed that the new equipment improved communication. Equipment-specific ratings can be found in Figure 1. A total of 10 staff participated in the focus group where they highlighted several positive outcomes. First, technology increased family engagement during care plan meetings. Staff expressed that being "able to put a face to a name and [families] are able to see us and interact with us versus just doing a phone conference," made the care process more personal. One staff, for example, highlighted how the therapy team now uses the video technology to show families exactly the type of therapy the resident is receiving. Enhanced communication helped families become more familiar with the resident care needs and goals during discharge. One staff member even suggested that resident and family engagement provided by the increased technology may shorten length of stay because families feel more prepared to provide care at home. Additional technology also made it easier for residents to connect virtually with outside consulting physicians, thereby saving time and transportation costs. Residents enjoyed the increased privacy resulting from extra technology during calls with their family. Once staff set the equipment up, they could leave the tablet in front of the resident because it had a holder. In addition, extra equipment freed up staff time because they did not have to search for equipment or be physically next to the resident to hold the equipment. This also allowed the residents to speak with their families for longer periods. Lastly, all equipment was user-friendly such that staff and residents with different comfort levels using technology were able to use them with no major issues. Staff also reported that all residents were receptive to trying the technology. Overall, the increased technology facilitated communication among staff, residents, and families in new and substantial ways. Currently, many LTC facilities do not have infrastructure that promotes everyday technology use to help residents connect with providers and families.6Seifert A. Batsis J.A. Smith A.C. Telemedicine in long-term care facilities during and beyond COVID-19: challenges caused by the digital divide.Front Public Health. 2020; 8: 601595Crossref Scopus (17) Google Scholar Barriers to technology access can worsen health disparities.6Seifert A. Batsis J.A. Smith A.C. Telemedicine in long-term care facilities during and beyond COVID-19: challenges caused by the digital divide.Front Public Health. 2020; 8: 601595Crossref Scopus (17) Google Scholar,7Jacobs M. Ellis C. Telemedicine disparities during COVID-19: provider offering and individual technology availability.J Am Geriatr Soc. 2021; 69: 2432-2434Crossref PubMed Scopus (5) Google Scholar One study, for example, found that LTC residents who did not have personal contact, including phone calls, with loved ones during COVID-19 restrictions experienced 35% greater excess mortality compared with residents who had personal contact.8Savage R. Rochon P. Na Y. et al.Excess mortality in long-term care residents with and without personal contact with family or friends during the COVID-19 pandemic.J Am Med Dir Assoc. 2022; 23: 441-443.e1Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar Considering this evidence, our data indicates that noticeable improvements care processes and resident and family engagement can be observed simply by providing LTC facilities with communication technology equipment. Although there have been calls to increase technology access for residents in nursing homes amid COVID-19,1Cudjoe T.K.M. Kotwal A.A. "Social Distancing" amid a crisis in social isolation and loneliness.J Am Geriatr Soc. 2020; 68: E27-E29Crossref PubMed Scopus (57) Google Scholar,2Eghtesadi M. Breaking social isolation Amidst COVID-19: a viewpoint on improving access to technology in long-term care facilities.J Am Geriatr Soc. 2020; 68: 949-950Crossref PubMed Scopus (49) Google Scholar there are concerns that increasing availability and reliance on such technologies would increase staff burdens associated with assisting residents in using the technology.9Ruopp M.D. Overcoming the challenge of family separation from nursing home residents during COVID-19.J Am Med Dir Assoc. 2020; 21: 984-985Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar However, our results show that technology actually reduced staff burden by helping residents engage independently with their families, thereby freeing up staff time for other activities. Unlike previous research indicating that incorporating new technology may be incompatible with residents' limited technological experience,6Seifert A. Batsis J.A. Smith A.C. Telemedicine in long-term care facilities during and beyond COVID-19: challenges caused by the digital divide.Front Public Health. 2020; 8: 601595Crossref Scopus (17) Google Scholar,10Li W. Ornstein K.A. Li Y. et al.Barriers to learning a new technology to go online among older adults during the COVID-19 pandemic.J Am Geriatr Soc. 2021; 69: 3051-3057Crossref Scopus (2) Google Scholar our findings highlight all residents at the facility were receptive to learning and adopting the new technology into everyday use. This additionally suggests resident unfamiliarity with new technology may be a small barrier to overcome. Limitations of the current study include implementation at only one facility and soliciting feedback from a small sample. Future research should examine organizational and personal level factors impeding technology uptake and acceptability across different sites and assess the return on investment and long-term sustainability.

Abstract Rates of new HIV diagnoses among people 55+ years old remained unchanged between 2015–2019, suggesting potential HIV prevention challenges in the aging population due to co-morbidities, social isolation, and age-related stigma. Socio-cultural factors play a strong role in influencing HIV outcomes. Social cohesion — including appraisals of trust in neighbors and levels of belongingness to a community — has been shown to be an important channel for HIV prevention in the general population. However, there is scant evidence about how social cohesion relates to HIV prevention and care engagement among older adults. We employed a convergent, parallel mixed-methods study to investigate this topic among a sample (n =17) of adults aged 50+ living with HIV in New Haven, CT. We conducted semi-structured interviews which were analyzed using thematic analysis in NVivo.v12. We also collected quantitative data in RedCap and calculated descriptive statistics in STATA.v16. Participants were on average 57 years of age (SD=4); 53% female, and 69% Black/African American. Participants’ trust in their neighborhoods was low [mean=2.61 (range 1 - 5, where 5 indicates high trust)]. In interviews, trust did not significantly influence one’s HIV status disclosure or care management. Instead, participants often identified their faith in God or relationship with local churches as significant sources of social and informational support they often rely on for their HIV-related needs. Our results show that investigating the impact of religious belonging on outcomes may be a fruitful path of research to improve HIV outcomes among the aging population.

Adverse childhood experiences (ACEs) and trauma have been linked to decreased psychosocial and physiological health functioning. While various individual and community-level interventions to address ACEs have been reported, one novel approach that has not been explored in detail is a community-engaged causal loop diagramming project, or systems mapping project (SMP), in which diverse stakeholders work together to document the forces that are creating the outcomes and patterns within the community. To better document and understand the impact of participation in an SMP, we conducted in-depth, qualitative interviews with 16 stakeholders who were involved in a systems-mapping process facilitated by a local nonprofit in Eastern North Carolina. We used an iterative, content analysis coding process to generate and analyze themes from these interviews. Three major themes emerged: 1) Recognition and understanding of own trauma, 2) Trauma as both a community issue and an individual issue, and 3) Systems-mapping as a conceptual tool with practical benefits. All participants strongly recommended the systems-mapping approach to other communities and believed that it is a valuable tool for empowerment and provided several considerations for future organizers of similar systems-mapping projects. Our findings suggest that systems mapping is a feasible, transferable, and promising modality for understanding and addressing ACEs at the individual, interpersonal, and community-levels, as well as for putting community voices at the forefront of efforts to address ACEs.

Abstract This presentation reports the results of a scoping review which identified and evaluated existing engagement strategies, tools, and interventions for their fit with assisted living (AL). Using the PRISMA criteria, we evaluated 54 empirical studies in assisted living/residential care or nursing homes (NH) for how they engaged families and residents, promoted person-centered and/or safety in AL/NH care, and assessed relevant outcomes (safety, experience, service use, satisfaction with care, health behaviors, and quality of life). The strategies, tools, and interventions aimed to improve residents’ activities of daily living, function, and quality of life. Studies also targeted staff and family caregivers to increase knowledge, improve relationships, and decrease caregiving stress. Overall, the studies reported statistically significant changes in resident quality of life, agitation, antipsychotic use, staff knowledge and job satisfaction. Results from this systematic review will inform the development of a testable toolkit to increase engagement and improve safety in AL.

Background/Aims Community engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies Study. In this work, we describe and assess the Acceptability of Combined Community Engagement Strategies Study's crowdsourcing activities in order to examine the opportunities of crowdsourcing as a clinical trial community engagement strategy. Methods The crowdsourcing engagement activities involved in the Acceptability of Combined Community Engagement Strategies Study were conducted in the context of a phase 1 HIV antibody trial (ClinicalTrials.gov identifier: NCT03803605). We designed a series of crowdsourcing activities to collect feedback on three aspects of this clinical trial: the informed consent process, the experience of participating in the trial, and fairness/reciprocity in HIV clinical trials. All crowdsourcing activities were open to members of the general public 18 years of age or older, and participation was solicited from the local community. A group discussion was held with representatives of the clinical trial team to obtain feedback on the utility of crowdsourcing as a community engagement strategy for informing future clinical trials. Results Crowdsourcing activities made use of innovative tools and a combination of in-person and online participation opportunities to engage community members in the clinical trial feedback process. Community feedback on informed consent was collected by transforming the clinical trial's informed consent form into a series of interactive video modules, which were screened at an open public discussion. Feedback on the experience of trial participation involved designing three fictional vignettes which were then transformed into animated videos and screened at an open public discussion. Finally, feedback on fairness/reciprocity in HIV clinical trials was collected using a crowdsourcing idea contest with online and in-person submission opportunities. Our public discussion events were attended by 38 participants in total; our idea contest received 43 submissions (27 in-person, 16 online). Facebook and Twitter metrics demonstrated substantial engagement in the project. The clinical team found crowdsourcing primarily useful for enhancing informed consent and trial recruitment. Conclusion There is sufficient lay community interest in open calls for feedback on the design and conduct of clinical trials, making crowdsourcing both a novel and feasible engagement strategy. Clinical trial researchers are encouraged to consider the opportunities of implementing crowdsourcing to inform trial processes from a community perspective.

Objective: To assess the potential for crowdsourcing to complement and extend community advisory board (CAB) feedback on HIV clinical trials. Crowdsourcing involves community members attempting to solve a problem and then sharing solutions. Methods: CAB and crowdsourced approaches were implemented in the context of a phase 1 HIV antibody trial to collect feedback on informed consent, participation experiences, and fairness. CAB engagement was conducted through group discussions with members of an HIV CAB. Crowdsourcing involved open events intended to engage the local community, including interactive video modules, animated vignettes, and a creative idea contest. Open coding and analysis of emergent themes were conducted to compare CAB and crowdsourced feedback. Results: The crowdsourcing activities engaged 61 people across three events; nine people engaged in CAB feedback. Compared with CAB participants, crowdsourcing participants had lower levels of education and income, and higher levels of disability and unemployment. Overlap in CAB and crowdsourced feedback included recommendations for enhancing communication and additional support for trial participants. Crowdsourcing provided more detailed feedback on the impact of positive experiences and socio-economic factors on trial participation. CAB feedback included greater emphasis on institutional regulations and tailoring trial procedures. Crowdsourced feedback emphasized alternative methods for learning about trials and concerns with potential risks of trial participation. Conclusion: Conducting crowdsourcing in addition to CAB engagement can yield a broader range of stakeholder feedback to inform the design and conduct of HIV clinical trials. Video abstract: