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.

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.

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.

The Báa nnilah Program: Results of a Chronic-Illness Self-Management Cluster Randomized Trial with the Apsáalooke Nation.

Indigenous people in Montana are disproportionately affected by chronic illness (CI), a legacy of settler colonialism. Existing programs addressing CI self-management are not appropriate because they are not consonant with Indigenous cultures in general and the Apsáalooke culture specifically. A research partnership between the Apsáalooke (Crow Nation) non-profit organization Messengers for Health and Montana State University co-developed, implemented, and evaluated a CI self-management program for community members. This article examines qualitative and quantitative program impacts using a pragmatic cluster randomized clinical trial design with intervention and waitlist control arms. The quantitative and qualitative data resulted in different stories on the impact of the Báa nnilah program. Neither of the quantitative hypotheses were supported with one exception. The qualitative data showed substantial positive outcomes across multiple areas. We examine why the data sets led to two very different stories, and provide study strengths and limitations, recommendations, and future directions.

Co-designing community-level integral interventions for active ageing: a systematic review from the lens of community-based participatory research.

BACKGROUND: While community-level interventions for promoting active ageing have received increasing attention and there is a trend to leverage technology to support traditional physical or social interventions, little hands-on guidance exists for designing these integral interventions. This study aimed to examine the interventions reported in the literature guided by Community-Based Participatory Research (CBPR) principles. The goal is to extract insights that inform future practices in co-designing integral interventions for active ageing. METHODS: The systematic review focused on community-level interventions promoting active ageing that integrated physical, social, and digital elements, i.e., integral interventions. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. The included interventions were analysed abductively based on the CBPR principles. RESULTS: A total of 13 studies were included, and 24 design considerations were generated under eight categories. Further reflection identified the interrelated nature of these design considerations and pinpointed the gaps in current research. This study highlights the urgency and importance of sharing recruitment methods and resource allocation details, recording and reporting collaboration specifics, and disseminating findings to stakeholders beyond academia. CONCLUSIONS: This study offers valuable insights and practical guidance to researchers and practitioners developing community-level integral interventions for active ageing. The findings also serve as a starting point for accumulating knowledge and practice in co-designing integral interventions for active ageing at the community level. The next crucial phase involves evaluating these design considerations within real-world cases to assess their applicability and identify potential areas for improvement.

Training Community Leaders to Serve as Equal Partners in Research: Penn Community Scholars Program, 2015-2023.

An implementation and effectiveness evaluation of the Community Scholars Program was conducted at the University of Pennsylvania to enhance community capacity to collaborate with academics in mutually beneficial, equitable, and transformative research. Mixed methods were employed using administrative data, surveys, and key informant interviews. Participants expressed high satisfaction, valued interactive learning, and identified areas for improvement. The program increased knowledge and self-confidence in research-related skills and trust in the research process. The program serves as an institutional model to create long-term, mutually beneficial community-academic partnerships. (Am J Public Health. 2024;114(3):284-288. https://doi.org/10.2105/AJPH.2023.307549).

The utility of community-based participatory research: Increasing research engagement among minoritized ethnoracial groups.

OBJECTIVE: This article conceptually examined the need for and utility of community-based participatory research (CBPR) approaches for increasing rates of engagement in psychological research among underserved minoritized ethnoracial groups. METHODS: This article examined the literature for relevant studies examining rates of research engagement by minoritized ethnoracial groups, significant factors precluding research engagement, and the consequences of this disparity for mental health outcomes. The theoretical literature outlining the development and utility of alternative, community-based participatory research methods was included. Key features of CBPR were examined along with limitations of current approaches. A case study example of CBPR is provided. RESULTS: The use of CBPR approaches has been documented to improve health outcomes, reduce stigma toward mental health research and treatment, and build the professional capacity of community partners, particularly among minoritized ethnoracial groups. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: CBPR engagement practices are a means of reducing the mental health research gap for ethnic and racial minoritized groups. The use of such approaches in future research and practice will directly inform how existing psychological treatments may be modified per the needs of the patient, address long standing issues of cultural mistrust toward professional institutions, and reduce mental health stigma in underserved communities. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

The power of community-based participatory research (CBPR).

OBJECTIVE: Community-based participatory research (CBPR) is based on power as fundamental to doing research. It evolved as a way of "knowing" from the broader idea of natural science. While previously viewed as objective, natural science is now understood as, at least, partially socially constructed. METHOD: History of research and epistemology is reviewed in terms of science. More specifically, we delve into science as social construction and how this conceptually opens the door to considering power in its processes. We then unpack CBPR as one way to do mental health research that artfully weaves power into method. RESULTS: Natural science has evolved from believing scientism (i.e., the scientific method) is sufficient to describe physical and social phenomena to terms of social constructivism; namely, the social processes that impact investigators are necessary to understand science and its product. This highlights the role of power; namely, investigator choices about hypotheses, methods, analyses, and interpretations influence the products of individual studies. The recovery movement is the embodiment of power that significantly changed research and rehabilitation in mental health. CBPR has emerged to include people with lived experience in the research enterprise. CBPR is partnership among people with lived experience, health scientists, and service providers in all facets of doing research. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Integrating CBPR into rehabilitation science has led to findings and actions that better serve community objectives. Continuing to weave CBPR into research and development will further enhance recovery in practice. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Validation of the Measurement Approaches to Partnership Success (MAPS) Questionnaire.

Conceptualizing and testing factors that contribute to the success of community-academic partnerships are critical to understanding their contributions to the health and well-being of communities. Most measures to date focus on factors that contribute to the development of new partnerships, and only a few have been adequately tested and validated. Methods. The Measurement Approaches to Partnership Success (MAPS) study followed a community-based participatory research (CBPR) approach and a multiphase process that included the construction and pilot testing of a questionnaire, and a national survey to validate the psychometric properties of the questionnaire in long-standing CBPR partnerships (existing ≥ six years). All members within partnerships were recruited to complete the survey (55 partnerships with 563 partners). We used confirmatory factor analysis (CFA), Cronbach's alpha statistics, and a pairwise correlations approach to assess discriminant and convergent validity, and assessed internal consistency, and test-retest reliability. Results. All MAPS Questionnaire dimensions demonstrated strong validity and reliability and demonstrated agreement over time. Conclusion. The MAPS Questionnaire includes seven dimensions and 81 items related to the MAPS conceptual model and provides a scientific, in-depth measurement tool that allows long-standing CBPR partnerships to evaluate their work toward achieving health equity.

Negotiating access to community-based participatory research.

PURPOSE: Community-based participatory research (CBPR) that improves social capital can be a powerful tool for promoting mental health and well-being. This work explores what gaining, maintaining, and losing access to this type of CBPR looks like from a reflexive research perspective. METHOD: I describe and reflect on my experiences conducting a mixed-methods study of an existing CBPR to increase social capital in Switzerland. I draw on ethnographic observations, field notes, and reflexive memos collected during fieldwork between 2016 and 2020. RESULTS: I negotiated access to the CBPR across three levels: (1) formal organizational with intervention leaders, (2) implementational with facilitators, and (3) the community/group level with participants. Intervention leaders let me conduct research if they benefitted from my work in a timely and reinforcing way, facilitators granted access if I made myself helpful and supported their work, and community members accepted me if I participated in their community meaningfully. I lost access when my findings posed a potential risk to the intervention funding. CONCLUSION: I highlight how access is a fluid and complex process that can change throughout CBPR. I show the importance of reflexive analysis to understand how access is negotiated in diverse settings, what sources of social capital are needed to engage in these negotiations, and how positionality and power play a role in this process.

A systematic review of community-based participatory research studies involving individuals with mental illness.

OBJECTIVE: This systematic review examined community-based participatory research (CBPR) studies in which people with mental illness (PWMI) directly contributed to research projects. The purpose was to describe study characteristics, team structure and logistics, and level of involvement of in the research process. METHOD: We searched the PsycINFO database from January 2000 to July 2020, identifying 1,395 records and analyzing the 31 that met inclusion criteria. Articles were eligible if they were (a) published in English in a peer-reviewed journal; (b) explicitly stated that at least one adult with mental illness assisted with the study as a CBPR team member; and (c) included a research outcome. RESULTS: Most studies collected qualitative data. Project length, team composition, and frequency of meetings were not specified in about one third of the articles. Twenty-nine studies reported involvement of people with mental illness in research activities such as recruitment, data collection, transcription, and analysis. Nearly half did not specify if they received any training. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Individuals with mental illness were heavily involved in planning and conducting research, demonstrating the feasibility of meaningful involvement. Future research should consider how people with lived experience can assist with quantitative methods, and articles should clearly and explicitly describe characteristics of the partnership (e.g., team composition, frequency of meetings, compensation). The protocol is published in Open Science registry at https://osf.io/mshfb. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Cultivating Relationships as a Community-Based Recruitment Strategy in Transdisciplinary Aging Research: Lessons From an Academic-Community Partnership.

Participation of Black American older adults in community-engaged research remains challenging in health sciences. The objectives of this study were to describe the specific efforts, successes, and challenges in recruiting Black American older adults in research led by the Health and Wellness in Aging Across the Lifespan core, part of the Virginia Commonwealth University Institute for Inclusion, Inquiry, and Innovation (iCubed). We conducted a cross-case analysis of 6 community-engaged research projects using the community-engaged research continuum model. Successful recruitment strategies comprised a multifaceted approach to community-based collaboration, including a wellness program with a long standing relationship with the community, engaging key stakeholders and a community advisory board, and building a community-based coalition of stakeholders. Posting flyers and modest monetary compensation remain standard recruitment strategies. The cross-case analysis offered critical lessons on the community's nature and level of engagement in research. Relationship building based on trust and respect is essential to solving complex aging issues in the community.

How Can We Find Out What Indigenous Children and Their Families Need to Manage Weight? Lessons from Formative Nutrition Intervention Research with First Australians.

In Australia, Indigenous children have rates of overweight and obesity 1.5 times those of non-Indigenous children. Culturally safe and effective nutrition interventions are needed for this group. This paper aims to describe a Community-based Participatory Action Research (CPAR) approach to designing formative nutrition intervention research with First Australian children and their families and to reflect on the challenges arising from this process. After obtaining ethical approvals, a Steering Committee (SC), including nine Aboriginal and Torres Strait Islander people experienced in delivering or receiving health care, was established as a project governance body to develop culturally safe project materials and methods. The Indigenous research method of yarning circles was chosen by the SC for the community consultation, and the First Australian SC members were trained to collect the data. They liaised with community organizations to recruit yarning circle participants. Individual interviews conducted by an Aboriginal research assistant replaced yarning circles due to the COVID-19 pandemic lockdowns. While the CPAR approach to formative research was successful, the pandemic and other factors tripled the study duration. To authentically, ethically and safely engage First Australians in research, researchers need to decolonize their methodological approach, and funding bodies need to allow adequate time and resources for the process.

Cultivating an ecosystem: A qualitative exploration of sustainability in long-standing community-based participatory research (CBPR) partnerships.

Background: While sustainability is crucial to the success of community-based participatory research (CBPR) partnerships, there is a lack of conceptual clarity on what defines sustainability and what characterizes sustainability-promoting practices in long-standing (in existence ≥ 6 years) CBPR partnerships. Objectives: The aim of this article is to explore the definition of sustainability, as well as practices that influence sustainability from the perspectives of academic and community experts in long-standing CBPR partnerships. Methods: This qualitative analysis is part of Measurement Approaches to Partnership Success (MAPS), a participatory mixed methods validity study that examined "success" and its contributing factors in long-standing CBPR partnerships. Thematic analysis of 21 semi-structured interviews was conducted, including 10 academic and 11 community experts of long-standing CBPR partnerships. Results: The key defining components of sustainability we identified include: distinguishing between sustaining the work of the partnership and ongoing relationships among partners; working towards a common goal over time; and enduring changes that impact the partnership. We further identified strengthening and capacity building practices at multiple levels of the partnership that served to promote the sustainability of the partnership's work and of ongoing relationships among partners. Conclusions: Sustainability can be understood as supporting an ecosystem that surrounds the beneficial relationships between academic and community partners. Ongoing evaluation and application of practices that promote the sustainability of partnership activities and relationships may strengthen the long-term effectiveness of CBPR partnerships in advancing health equity.

Health and quality of life among women after participation in a CBPR-informed physical activity intervention: with a pandemic perspective.

The lack of culturally and contextually oriented interventions promoting physical activity (PA) has led to increased physical inactivity among women living in disadvantaged neighbourhoods in Sweden. In this study one such intervention informed by community-based participatory research (CBPR) has been evaluated among 34 women from a disadvantaged neighbourhood before and during COVID-19. Health-related quality of life (HRQOL), behavioural and biomedical outcomes were assessed directly prior and post-intervention, followed by evaluations at 6-months and 18-months follow-up during COVID-19. The results revealed that HRQOL, particularly psychological, social, and environmental health significantly increased post-intervention compared to prior to intervention but reversed back at 6-months follow-up. Perceived health satisfaction and environmental health increased at 18-months follow-up during COVID-19. Participation in PA improved post-intervention and at 6-months follow-up. Everyday activities and fruit and vegetable intake continued to increase through all timepoints. Systolic blood pressure significantly decreased post-intervention and 6-months follow-up; blood flow rate increased significantly at all timepoints. Overall, the findings underscores the potential effectiveness of CBPR approaches in promoting and sustaining healthy lifestyles, even during acute situations such as the COVID-19. It may even serve as a future model for promoting health and addressing health disparities in similar groups.

Cripping Collaboration: Science Fiction and the Access to Disability Worlds.

Inclusive participatory approaches strive to make participants with mild intellectual disabilities (MID) co-researchers. However, academic standards of knowledge production and the need for cognitive skills can complicate collaboration. I argue that collaboration with people with disabilities is not about efforts of inclusion, but instead, it is our methodologies that need to be "cripped." This means moving away from the ideal of inclusion, toward a more interdependent and relational understanding of access and collaboration. This multimodal article shows how my "research subject" Olof and I explored this way of working together by describing the coproduction of the science-fiction film "O."

Braiding the Healing Gifts of Photovoice for Social Change: The Means Are Ends in the Making.

Photovoice is an important participatory action method for motivating social change. The potential for this change within the processes of the method remains under-explored. We present the voice and perspectives of three health promotion practitioners who have important connections to photovoice: a grandmother and co-founder of the method, a nurse from Wales, and an early adopter seeking change. Through braided storytelling, the voices describe their history with photovoice and how their relationship to the method has changed over time, arguing ultimately that in photovoice the means are as important as the ends for advancing relations with others, understanding and working with power, and realizing the gifts the processes bring.

The community engagement course and action network: strengthening community and academic research partnerships to advance health equity.

Background: Historically Black Colleges and Universities and Minority Serving Institutions are uniquely positioned to implement community-campus research partnerships based on a history of service, the pursuit of community trustworthiness and student demographics often similar to surrounding marginalized communities. The Morehouse School of Medicine Prevention Research Center collaborates with members of Historically Black Colleges and Universities, Minority Serving Institutes, and community organizations on the Community Engaged Course and Action Network. This network is the first of its kind and aims to strengthen members' ability to implement Community-Based Participatory Research (CBPR) principles and partnerships. Projects address public health priorities including mental health among communities of color, zoonotic disease prevention, and urban food deserts. Materials and methods: To assess the effectiveness of the network, a Participatory Evaluation framework was implemented to conduct process evaluation which included review of partnership structures, operations, project implementation processes, and preliminary outcomes of the research collaborations. A focus group of Community Engagement Course and Action Network members (community and academic) was also conducted to identify benefits and challenges of the network with emphasis on key areas for improvement to further enhance the relationships between partners and to facilitate their subsequent community-campus research. Results: Network improvements were tied to themes strengthening community-academic partnerships including sharing and fellowship, coalition building and collaboration, and greater connections and awareness of community needs through their current community-academic partnerships. The need to conduct ongoing evaluation during and after implementation, for determining the early adoption of CBPR approaches was also identified. Conclusion: Evaluation of the network's processes, infrastructure, and operation provides early lessons learned to strengthen the network. Ongoing assessment is also essential for ensuring continuous quality improvement across partnerships such as determining CBPR fidelity, assessing partnership synergy, and dynamics, and for quality improvement of research protocol. The implications and potential for advancing implementation science through this and similar networks are great towards advancing leadership in modeling how foundations in community service can advance to CBPR partnership formation and ultimately, health equity approaches, that are local defined and assessed.