Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework.

BACKGROUND: A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case. METHODS: The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software. RESULTS: The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research. CONCLUSION: In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.

PReventing and Approaching Crises for frail community-dwelling patients Through Innovative Care (PRACTIC): protocol for an effectiveness cluster randomised controlled trial.

BACKGROUND: Demographic changes, with an increasing number and proportion of older people with multimorbidity and frailty, will put more pressure on home care services in municipalities. Frail multimorbid people receiving home care services are at high risk of developing crises, defined as critical challenges and symptoms, which demand immediate and new actions. The crises often result in adverse events, coercive measures, and acute institutionalisation. There is a lack of evidence-based interventions to prevent and resolve crises in community settings. METHODS: This is a participatory action research design (PAR) in a 6-month cluster randomised controlled trial (RCT). The trial will be conducted in 30 municipalities, including 150 frail community-dwelling participants receiving home care services judged by the services to be at risk of developing crisis. Each municipality (cluster) will be randomised to receive either the locally adapted TIME intervention (the intervention group) or care as usual (the control group). The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) is a manual-based, multicomponent programme that includes a rigorous assessment of the crisis, one or more interdisciplinary case conferences, and the testing and evaluation of customised treatment measures. PAR in combination with an RCT will enhance adaptations of the intervention to the local context and needs. The primary outcome is as follows: difference in change between the intervention and control groups in individual goal achievement to resolve or reduce the challenges of the crises between baseline and 3 months using the PRACTIC Goal Setting Interview (PGSI). Among the secondary outcomes are the difference in change in the PGSI scale at 6 months and in neuropsychiatric symptoms (NPSs), quality of life, distress perceived by professional carers and next of kin, and institutionalisation at 3 and 6 months. DISCUSSION: Through customised interventions that involve patients, the next of kin, the social context, and health care services, crises may be prevented and resolved. The PReventing and Approaching Crises for frail community-dwelling patients Through Innovative Care (PRACTIC) study will enhance innovation for health professionals, management, and users in the development of new knowledge and a new adapted approach towards crises. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05651659. Registered 15.12.22.

Examining menstrual health experiences in Philadelphia, PA: A qualitative investigation.

BACKGROUND: While menstruation is a physiologic process, it remains highly stigmatized. Despite the sheer number of menstruators, menstruation is a highly individualized experience, with wide variation in duration, symptoms, and management. This wide variability lends itself to large disparities in access to menstruation management products and subsequently the lived experience of menstruators. OBJECTIVES: The research team sought to understand lived menstrual experiences, symptoms, management tactics, and commonly used and desired resources among 20 cisgendered women aged 18-45 years in Philadelphia. DESIGN: This project was a qualitative research study. METHODS: We used a collaborative, community-based participatory research approach with No More Secrets, a Philadelphia-based grassroots sexuality awareness and menstrual health hub. Semi-structured telephone interviews were used to gain insight into general menstruation-related experiences, communication, worries, and concerns, with subsequent thematic analysis via Key Words in Context approach. RESULTS: Four themes emerged following analysis: cycle characteristics, menstruation management, coping resources, and future resources. Participants largely spoke about their menses as a negative experience, asked for more comprehensive, verified sources of information and needed greater access to menstrual management supplies. CONCLUSION: Menstruation is a highly individualized experience with a large variety in knowledge, menstrual product use, and individual needs. Despite the individuality of menstruation, our community-based research shows that there is a dire need for interventions that promotes knowledge and access to menstrual care.

Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury.

Background Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents' and clinicians' perspectives regarding HOPE's usability, acceptability, and future implementation. Methods Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis. Results Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE's family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI. Conclusions HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study's findings demonstrate HOPE's usability and acceptability from end-users' perspectives and will guide implementation.

Healthcare Service Utilization and Perceived Gaps: The Experience of French-Speaking 2S/LGBTQI+ People in Manitoba.

Ethnolinguistically diverse 2S/LGBTQI+ (two-spirit, lesbian, gay, bisexual, transgender, queer and intersex) populations have unique healthcare needs and experience health inequities compared to their cisgender or heterosexual peers. This community-based participatory study sought to describe the profile and healthcare needs and experiences of official language minority French-speaking 2S/LGBTQI+ adults in Manitoba. Participants (N = 80) reported that gender and sexual identity were often concealed from service providers; many respondents faced discrimination based on their ethnolinguistic and sexual identities. Service gaps are identified pertaining to mental and sexual health; locating 2S/LGBTQI+-friendly, patient-centred care in French is difficult. Policy and practice should address systemic inequity and discrimination experienced by this equity-seeking population.

Challenges and Lessons from Conducting a Community-Engaged Evaluation of a Community Advisory Board-A Case Study from Flint.

Community-engaged research often poses challenges due to exactly those qualities that make it desirable: it provides a new model of research that differs in many ways from top-down, university-led, prospectively designed approaches. While many have discussed the challenges to conducting community-engaged research, few have provided precise and generalizable lessons for how to surmount these challenges. Here we discuss the challenges experienced in a project that was community-engaged at three levels: 1) a research team consisting of an academic and a community partner as well as a community and academic research assistant, 2) the research team engaged with a Community Advisory Board called the CBOP-CERB (Community Based Organization Partners-Community Ethics Research Board) throughout the project, and 3) the research involved recruiting community participants from an area with a historical distrust of researchers and research: Flint Michigan. We also discuss administrative challenges that this multilevel community-engagement posed. Most important, we provide practical lessons in order for future community-engaged research to avoid or mitigate many of these challenges.

Strategies for Recruiting Older Black Men into Aging and Alzheimer's Research.

BACKGROUND: Despite their high risks for Alzheimer's disease, older Black men are minimally represented in Alzheimer's research and clinical trials. The absence of older Black men in Alzheimer's research limits our ability to characterize the changes associated with cognitive impairments in older Black men-a key health disparity concern. METHODS: Drawing on lessons we learned from years of community-based participatory research in Newark, NJ, we highlight recruitment strategies developed alongside community partners to guide our enrollment and retention efforts for Black men. RESULTS: We identified seven recruitment strategies: provide indirect health education through social programming, target older men through the younger men in their lives, go beyond Black churches, use older Black men as trained community ambassadors, enlist the women in Black men's lives, frame research participation as a legacy to leave their sons, and use past and current Black men participants as role models. CONCLUSIONS: These recruitment strategies help us address many barriers to recruiting older Black men. They can be easily implemented by researchers conducting aging and brain health research or interested in working with older Black men and under-represented populations.

Infectious Disease Preparedness for Homeless Populations: Recommendations from a Community-Academic Partnership.

BACKGROUND: People experiencing homelessness are at increased risk of infectious disease transmission due to congregate living conditions, barriers to healthcare, and excess burden of underlying chronic disease. OBJECTIVES: We are a multisectoral community-academic partnership working to address the intersecting crises of homelessness and health disparities in Tippecanoe County, Indiana. We offer key recommendations for infectious disease preparedness and risk mitigation for homeless populations based on our ongoing community-based participatory research and lessons learned through COVID-19 response and Monkeypox preparations. LESSONS LEARNED: Infectious disease preparedness and response in homeless populations requires strong local partnerships; ongoing training and support for staff and volunteers of homeless shelters and service agencies; tailored outreach, education, and communication with people experiencing homelessness; and standardized processes for creating, disseminating, enforcing, and evaluating public health policies in homeless shelters. Consistency and open communication are key to a successful community-academic partnership. CONCLUSIONS: Community-academic partnerships are critical to effective infectious disease preparedness in homeless populations. The lessons learned from community-based participatory research with homeless communities and multisectoral partners on the frontline can improve future outbreak and pandemic response for people experiencing homelessness and other vulnerable communities in the United States.

Implementing a Community Engagement Model to Develop a Community-Driven Oral Health Intervention.

BACKGROUND: Using community-engaged research may result in interventions that reduce infant oral health disparities in underserved populations. OBJECTIVE: Develop community partnerships to create a sustainable infant oral health program that meets specific community-identified needs and provides an interprofessional education experience. METHODS: Partnering with the Homewood Community Engagement Center, researchers engaged and surveyed key community partners to assess the need for an infant oral health invention. LESSONS LEARNED: Community-identified organizing principles and barriers became the framework for, "Healthy Teeth, Healthy Me," a community-driven infant oral health program. Barriers, like access to care, were addressed with community-specific solutions like agreements with local dental clinical for referrals. CONCLUSIONS: Community partnerships can be leveraged to develop oral health programs that fit specific community needs and provide resources to families at greatest risk for child dental caries. Community engagement can be used to modify the intervention to meet oral health needs of other vulnerable communities.

Promoting COVID-19 Vaccine Confidence and Access among Youth Experiencing Homelessness: Community-Engaged Public Health Practice.

BACKGROUND: Youth experiencing homelessness (YEH) face a wide range of complex barriers to COVID-19 vaccine confidence and access. OBJECTIVES: Describe our process for engaging a cross-sector team centering equity and youth voice; outline our intervention strategies to enhance COVID-19 vaccine confidence and access among YEH; and discuss lessons learned through this community-engaged process. METHODS: We engaged partners from across sectors, including youth-serving agencies, healthcare organizations, public health organizations, and YEH. We used focus groups, key informant interviews, and other community engagement strategies to develop and implement a series of interventions aimed to increase COVID-19 vaccine confidence and access among YEH. RESULTS: We identified youths' key concerns about vaccine confidence and access. To address these concerns, we implemented four community-driven interventions: youth-friendly messaging, health events, vaccine aftercare kits, and staff training. CONCLUSIONS: This community-engaged project highlighted the value of cross-sector partnership and consistent youth engagement in addressing vaccine confidence among YEH.

A Community-Based Participatory Approach in Applying the Sociocultural Resilience Model in U.S-Mexico Border Communities.

BACKGROUND: Behavioral models play a key role in identifying pathways to better health and provide a foundation for health promotion interventions. However, behavioral models based in epidemiological research may be limited in relevance and utility in practice. OBJECTIVES: We describe a participatory approach within a community-based participatory research partnership for integrating epidemiological and community perspectives into the application of the sociocultural resilience model (SRM). The SRM posits that cultural processes have a symbiotic relationship with health-promoting social processes, which contribute to the health advantages among Mexicanorigin and other Latinx populations. METHODS: Community action board members engaged with academic partners to interpret and apply the SRM to a community-clinical linkages intervention implemented in the context of three U.S.-Mexico border communities. In a two-day workshop, partners engaged in a series of iterative discussions to reach common definitions and measures for SRM constructs. RESULTS: Partners described daily cultural processes as the food they eat, how they communicate, and a collectivist approach to getting things done. For intervention activities, the partners opted for intergenerational storytelling, sharing of food, and artistic forms of expression. Partners included measures of cultural nuances such as border identity and the complexities that often arise from navigating bicultural norms. CONCLUSIONS: Collaborative approaches within community-based participatory research partnerships can facilitate the adaptation and measurement of conceptual health behavior models in community practice.

Community Health Workers Deliver Mental Health Intervention to Uninsured Latinx in Baltimore: Evaluation and Lessons Learned in a Pilot Program.

BACKGROUND: Implementation of evidence-based interventions to reduce depression among uninsured Latinx patients who are at high risk of depression are rare. OBJECTIVES: Our goal was to evaluate Strong Minds, a language and culturally tailored, evidence-based intervention adapted from cognitive behavioral therapy (CBT) for mild-moderate depression and anxiety, delivered by community health workers (CHWs) in Spanish to uninsured Latinx immigrants. METHODS: As part of the pilot, 35 participants, recruited from a free community primary care clinic, completed Strong Minds. Assessments and poststudy interviews were conducted. Paired t-tests were used to assess change of depressive symptoms at 3 and 6 months. LESSONS LEARNED: CHW delivery of depression care to this population was feasible and among those who completed the program, preliminary evidence of depression outcomes suggests potential benefit. CHWs had specific training and support needs related to mental health care delivery. CONCLUSIONS: Further implementation studies of depression care interventions using CHWs for underserved Latinx is needed.

A Model of Community Health Worker Integration into Schools: Community-based Participatory Research in Action.

BACKGROUND: Schools are rich sites for collaborations between health and educational sectors. OBJECTIVES: To identify lessons learned from formation of a community-academic partnership and application of community-based participatory research (CBPR) to develop a model that integrates community health workers into schools. METHODS: Individuals from an academic medical center, a large public school district, and a community-based research institute applied CBPR principles to reimagine schools as a place for improving the health of children. LESSONS LEARNED: Three lessons emerged. Leveraging each team member's expertise centered the partnership on community strengths, co-learning, and stakeholder engagement. Adherence to CBPR's principles of power sharing and equity helped navigate the challenges of collaboration between large institutions. Early focus on sustainability helped address unexpected issues, build capacity, and boost advocacy. CONCLUSIONS: This partnership demonstrates how CBPR fosters conditions in which equitable partnerships between research institutions and public schools can thrive to promote childhood health.

Developing the Feast for the Future Program through a Community Visioning Process.

BACKGROUND: Three tribal communities in the Southwestern United States have a long-standing partnership with the Johns Hopkins Center for Indigenous Health (JHCIH). OBJECTIVES: In response to community concerns about obesity, three tribal communities and Johns Hopkins Center for Indigenous Health partnered to develop culturally relevant plans for a new program. METHODS: Using a "community visioning" process, a community advisory board (CAB) from each community identified opportunities, challenges, goals, and visions for their communities. The CABs consulted with experts in pediatrics, nutrition, food distribution, agricultural restoration, and community and school gardening. RESULTS: The CABs developed seven components for Feast for the Future: 1) Edible School Gardens; 2) Traditional Food-ways Education Program; 3) Community Gardens, Orchards, and Greenhouses; 4) Farmers Markets; 5) Farmers Workshops; 6) Family Gardens; and 7) a Mobile Grocery Store. CONCLUSIONS: A community-based participatory action research (CBPAR) process was critical to developing a culturally appropriate program that built on community strengths.

Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers.

Integrating the voices of service users and providers in the design and delivery of health services increases the acceptability, relevance, and effectiveness of services. Such efforts are particularly important for youth opioid use treatments and services, which have failed to consider the unique needs of youth and families. Applying community-based participatory research (CBPR) and co-design can facilitate this process by contextualizing service user experiences at individual and community levels and supporting the collaborative design of innovative solutions for improving care. However, few studies demonstrate how to effectively integrate these methods and engage underserved populations in co-design. As such, this manuscript describes how our team wove CBPR and co-design methods to develop solutions for improving youth opioid use treatments and services in Canada. As per CBPR methods, national, provincial, and community partnerships were established to inform and support the project's activities. These partnerships were integral for recruiting service users (i.e., youth and caregivers) and service providers to co-design prototypes and support local testing and implementation. Co-design methods enabled understanding of the needs and experiences of youth, caregivers, and service providers, resulting in meaningful community-specific innovations. We used several engagement methods during the co-design process, including regular working group meetings, small group discussions, individual interviews and consultations, and feedback grids. Challenges involved the time commitment and resources needed for co-design, which were exacerbated by the COVID-19 pandemic and limited our ability to engage a diverse sample of youth and caregivers in the process. Strengths of the study included youth and caregiver involvement in the co-design process, which centered around their lived experiences; the therapeutic aspect of the process for participants; and the development of innovations that were accepted by design partners.

Perceptions of abused Chinese women on community-based participatory approach programme in addressing their needs.

BACKGROUND: The community-based participatory approach (CBPA) has gained increasing recognition worldwide for enhancing the effectiveness of intervention. It is relatively new in Chinese societies and participants' perceptions are underexplored. This study aims to explore abused Chinese women's perceptions on the CBPA programme in addressing their needs. METHODS: A total of 11 abused Chinese women were recruited for a focus group and individual interviews. A semi-structured interview guide was used. All interviews were audio-recorded and data were transcribed verbatim. Conventional content analysis was used for analysis. RESULTS: Four themes were identified regarding the women's perceptions and experiences of the community-based participatory approach programme: (1) Women's perceived acceptability of the CBPA programme; (2) Women's perceived usefulness of the CBPA programme; (3) Women's perceived feasibility of the CBPA programme; and (4) Empowering the women through participating in CBPA. CONCLUSIONS: Abused Chinese women had high perceived acceptance and positive experiences towards the community-based participatory approach. Women benefited from their robust participation throughout the process. The findings confirm the potential of using the community-based participatory approach in designing interventions for future programme planning and intervention to address the needs of abused Chinese women.