Post-Traumatic Stress Disorder (PTSD) is a common and often debilitating mental health issue for military veterans. The U.S. Department of Veterans Affairs has invested heavily in hiring and training clinicians able to deliver proven therapies for PTSD, known as evidence-based therapies (EBT). Despite this, many veterans with PTSD do not seek or receive these therapies. We sought to address two barriers to EBT uptake—lack of awareness of EBT and suspicion that they are of limited efficacy or fraught with adverse side effects—by engaging veterans in a participatory design process and dissemination of veteran-centric educational materials about EBT. Collaborative design (co-design) is a tool of community-based participatory research and an effective way to tailor communications. Our goal was to enhance these veterans’ capacity to talk about the benefits of EBT and thereby increase clinical care seeking among their peers. Using a 5-step creative process approach, we developed printable and electronic materials to support their efforts. We readily identified veterans who were engaged around mental health issues. We also learned that they were most interested in ensuring that fellow veterans with PTSD recognize their symptoms and receive help, rather than advocating for use of specific EBT’s. This paper outlines the process and lessons learned in developing a collaborative design project, offering a model to improve clinical engagement through culturally tailored communications.
A new service model for children and young people (CYP) considering or attempting suicide is needed. This model should be co-designed with CYP ensuring it meets their needs and is acceptable. Best practice suggests co-production should begin at the study development stage. This paper details a co-production approach that brought together CYP with lived experience of suicidality and other stakeholders (practitioners, service providers, academics, policymakers) to develop a study protocol. We outline the specific steps we took, and the mechanics of this process, before reflecting on the results. We share key learning regarding the strengths and limitations of our approach, including insights from one lived experience expert who co-authored this paper.
Photovoice is often conceptualised separately from the broader agenda to decolonise methodologies. To address this conceptual problem, this paper critically examines the academic literature on both photovoice and decolonising methodologies. Drawing from insights from decolonising scholarship, it proposes a conceptual framework consisting of three interconnected principles to decolonise photovoice practice. Principle one involves cultivating a decolonising consciousness that foregrounds the historical and ongoing entanglements of research with colonial logics. Principal two centres the development of an intersectional anti-racist consciousness, ensuring the inclusion of those harmed by colonial logics and creating intentional space within research to address intersectional racisms. Principal three seeks to reverse colonial ways of being, doing, and knowing so that research affirms cultural diversity, and epistemic plurality. This includes facilitating space for the social life forces of marginalised communities for self-narration, agency, refusal, and collective resistance. Using an autoethnographic approach the paper reflects on fieldwork to explore the affordance and limits of decolonising photovoice to challenge racist narratives in London. This study argues that while the conceptual project has potential, when enacted in practice, is entangled with colonial logics, is complex, contradictory, and fraught. For instance, whiteness circulated within the practice and power relations shaped by class, gender, immigration status between the researcher and the participants were evident. Decolonising photovoice requires critical reflexivity, embracing messy complexity, being attentive to colonial logics and power relations. As such, decolonising photovoice is not a destination, it is an ongoing process of disruption, reflection, reimagining and ‘staying with the trouble’.
This report presents a reflective methodological account of designing and facilitating a participatory research exploration and planning (PREP) workshop. The workshop brought together professionals and practitioners working with children, young people, families, and communities to shape the research direction for future community schools research. It had three aims: first, to embed participation at the earliest stage of research planning to ensure future questions were relevant, needed, and grounded in practice; second, to create a new network and strengthen a research culture that values participation across all stages of a project; and third, to use workshop insights to inform a collaborative research proposal and funding application. Using researcher reflections, facilitator notes, and post event discussions as its evidence base, the report examines the context, ethics, processes, and facilitation strategies that shaped the workshop. It also captures the personal and professional learning that emerged. The report offers practical guidance for designing and delivering participatory research exploration and planning workshops and highlights key considerations for researchers aiming to embed participation and collaboration in their agendas.
Although participatory research is increasingly used across various populations, it remains relatively uncommon in the field of disability. Moreover, researchers who adopt this approach rarely provide detailed accounts of the methods they use. In response to this shortcoming, this article aims to analyze the organizational participatory research experience conducted with a community organization that develops supported apartments for autistic adults, as well as individuals with intellectual or physical disabilities. The student facilitating the process adopted a reflective approach that helped identify the strategies used to support the research process. Her reflections were further informed by feedback and discussions with other individuals involved in the project. The strategies identified and their effects are presented, followed by a discussion of the key lessons learned from this experience. By sharing this information, the authors wish to contribute to the enrichment of knowledge and practices in participatory research, particularly in the field of disability.
# Background Despite global efforts to promote inclusion, youth with disabilities remain underrepresented in research, particularly in low-resource settings such as Uganda. They face systemic barriers, including limited access to training, discriminatory research practices, and societal perceptions that undermine their capabilities. As a result, they are often denied opportunities to develop research skills, contribute to knowledge production, and influence policies that affect their lives. The lack of structured, inclusive training and mentoring programs further exacerbates this exclusion, limiting their participation as both co-researchers and research professionals. # Objectives This study aimed to co-develop and pilot a disability-inclusive research training and mentoring program for youth with disabilities in Uganda. The specific objectives were (i.) to equip youth with disabilities with research skills to lead/conduct inclusive research studies; (ii) to foster knowledge sharing and advocacy for disability inclusion through youth-led initiatives; and (iii) to create employment opportunities for youth with disabilities in research. # Methods The study employed a co-creative development approach, the study adapted the Zimbabwean Youth Research Academy training manual to make it disability inclusive and customised to the Ugandan context through four participatory workshops, stakeholder feedback sessions, and iterative revisions. Fourteen youth researchers (seven pairs of one person with a disability and one without) were recruited to participate in the program. The structured program featured two weeks of intensive training in qualitative research and disability studies, three months of internships with peer support, and nine months of co-creative development of research activities of life histories for data collection, analysis and dissemination of findings. This manuscript describes the development, implementation and monitoring process of a disability-inclusive research training and mentorship program for youth with disabilities in Uganda. # Conclusions This study demonstrated the feasibility and impact of a participatory approach in co-developing and implementing a disability-inclusive research training and mentorship program for youth with disabilities in Uganda. By actively involving youth with disabilities throughout the design and implementation process, the programme fostered a sense of ownership and inclusivity, ensured relevance, and promoted the sustainability of acquired skills. These findings highlight the transformative potential of participatory research in empowering marginalized groups, equipping them with the necessary skills to engage in health research, and advocating for more inclusive knowledge production.
This study introduces FAIR2 Data Chats as a community-participatory research tool to advance data science for the public interest. The FAIR2 framework expands on the established FAIR data principles — Findable, Accessible, Interoperable, and Reusable — by introducing four additional principles tailored to social data: Frame, Articulate, Identify, and Report. These principles emphasize the importance of embedding historical and community knowledge throughout the data analytic process to enhance the understanding of social data and address discrimination bias. Drawing from foundations in causal inference, bias analysis, health disparities, and algorithmic fairness, FAIR2 Data Chats bring together community and research collaborators to enrich metadata and inform data analytics. This study provides principles and guidelines for the implementation of FAIR2 Data Chats and offers an example that highlights their relevance for research. As collaborators in FAIR2 Data Chats, community members with experiences represented in the data provided critical qualitative context to the data, enhancing its value, interpretation accuracy, and ethical use. Findings demonstrate the value of participatory methods in strengthening data science to advance the public interest.
Participatory Action Research (PAR) with unauthorised people entails distinct ethical and methodological challenges in contexts shaped by criminalisation and precarious legal status. This article examines a PAR project conducted in collaboration with a Brussels-based self-organised collective, which culminated in a collaboratively curated art exhibition. Drawing on fieldnotes and project documents, the analysis first describes the complexities of gaining access, establishing trust, consolidating partnerships and fostering ownership. It then focuses on two key tensions that emerged in practice: between participation and autonomy, and between anonymity and recognition. While PAR often aspires to extensive participation, the findings suggest that collaborators’ autonomy in determining the scope and form of their involvement must take precedence. Similarly, decisions about anonymity and recognition require careful contextual judgement, as ‘being visible’ may entail both risks of control and opportunities for recognition, including implications for regularisation procedures. By analysing the exhibition as an action initiative, the article contributes to debates on visibility, recognition, ownership, and power in participatory methodologies. It argues that, despite ongoing ethical negotiations, PAR remains a valuable approach for democratising the production and circulation of knowledge in migration research.
Patient and Public Involvement and Engagement (PPIE) describes a diverse set of practices that all aim to involve and engage people with lived experience in research, especially in the field of health. In the United Kingdom, such efforts have become a key aspect in publicly funded health and social care research. Successfully facilitating these PPIE efforts can be far from trivial, and requires acquiring skills and receiving appropriate training, which often is not yet part of curricula. This is particularly the case when concerning complex topics such as data intensive health research like artificial intelligence or dealing with diverse health conditions, such as multiple long-term conditions (sometimes called “co-morbidities”). Here, we present how we facilitated a community of practice that provided a learning environment for a diverse set of contributors - including patients, carers, clinicians, early-career researchers and PPIE experts. We describe the strategies employed to facilitate community interactions, highlighting the benefits for different contributors and the broader impact on the community- particularly in enhancing sustained, meaningful engagement between researchers and patients. Finally, we describe how such an approach could be replicated in different settings.
Mental health disparities remain a significant challenge in urban communities, particularly among youth exposed to neighborhood-level stressors such as gun violence, economic hardship, and systemic inequities. This manuscript outlines an innovative community-driven initiative led by a licensed clinical social worker, employed from the target community, in cooperation with university researchers. We describe an innovative, community-based mental health initiative—Mental Health Mondays—designed to provide support, education, and a safe space for local youth and families in Paterson, New Jersey. Utilizing a community-based participatory research (CBPR) approach, this initiative leverages community partnerships to foster engagement and promote mental health awareness. Additionally, this manuscript discusses the role of universities in supporting community-driven mental health initiatives and the importance of resource-sharing to address mental health inequities in urban settings.
Community-based research is most effective when the voices of residents are involved not only in the data collection phase, but the subsequent processes used to validate and synthesize findings. This tutorial describes our community-engaged approach to building trust, generating data, and validating research findings within a short time frame. We used three methods for community engagement: kitchen table methodology, neighborhood walks, and community validation. These methods were bookended by an initial project kickoff and a final presentation. Although these methods are already established in the literature, our tutorial is unique in that it describes how we combined these methods to holistically generate data and validate participants’ experiences.
This article describes participatory methods involved in the collaborative composition of two co-created pieces of music, showing how listening can be an integral part of the co-creation process. The approaches taken are adapted from Participatory Design – a method commonly adopted in manufacturing processes and software design. The Listening Composer projects resulted in two finished co-composed works: Healing Tales (2023), and A Gathered Stillness (2024), featuring notated scores created by non-musically trained participants under the leadership of a trained classical composer. The scores were performed by professional classical players, and accompanied voice and environmental recordings telling the stories of the participants themselves in their own words. Both projects began with 1-1 interviews of each participant and a narrative structure co-created by the groups themselves based on their lived experiences (in the first case, healthcare workers’ experiences of the Covid-19 pandemic, and in the second, Quakers’ silent meeting for worship). The second project used graphic scores and writing exercises to elicit musical material from the participants, and it also explored the group’s own conduct of business meetings as a method of accountable decision-making. Evaluation suggest that the approach could be very useful for classical ensembles wishing to create artistic outputs which authentically represent the voices of the people in the communities they are located amongst, with no compromise in artistic quality.
The purpose of this article is to 1) characterize the role of a “community health research champion” (CHRC), 2) outline a hybrid CHRC position which conjoins communities and universities for research, and 3) compare university-based and community-based researchers’ ideated perceptions of this position. Using a participatory co-design process, we contribute to the literature on champions in three ways. First, we examine the qualities, preparation, and supports needed for CHRCs to operate within community contexts and university structures. Second, we share actionable recommendations for how project teams can add CHRCs to advance equal community-university research partnerships. Finally, we distinguish two perceptions of how to complementarily implement the role as a “bridge” or “extender,” reflecting the different values and expectations of community-participatory or community-engaged research.
The knowledge mobilization potential of Participatory Action Research (PAR) has not been explored in depth, particularly in the context of research involving people with dementia. As such, this paper explores how an Action Group of people living with dementia contributed to meaningful and innovative research outputs, and critically reflects on the processes that fostered effective engagement of people with dementia in a PAR project. The Flipping Stigma in Dementia project was a PAR study (2019–2023) focused on addressing dementia-related stigma. Central to the project was the co-creation of the Flipping Stigma on its Ear Toolkit, an online resource that offers first-hand accounts, strategies for combating dementia-related stigma, and educational materials. Knowledge mobilization extended beyond the toolkit through community presentations, conference sessions, and feedback meetings, where Action Group members took active roles in dissemination. Their advocacy efforts included the development of promotional materials, such as postcards and T-shirts, and partnerships with organizations to incorporate the toolkit into training programs. By fostering safe and inclusive spaces for collaboration, Action Group members were empowered to lead efforts that challenge stigma and inspire social change.
For many Indigenous communities, research has too often been driven by outsiders, serving as a process that extracts knowledge from communities instead of engaging alongside them. In Hawaiʻi, Kānaka Maoli or Native Hawaiian, who are the first people to have inhabited the Hawaiian Islands, are leading various initiatives to elevate community voices in research. Waimānalo Pono Research Hui (WPRH) is a community-academic partnership founded in 2017 by the Hawaiian community of Waimānalo located on the island of Oʻahu. WPRH uses Indigenous methodologies and principles of community-based participatory research to actively engage Native Hawaiian community members in research. Due to its success, other Native Hawaiian communities outside of Waimānalo have requested to learn more about the practices and protocols of WPRH to grow the capacity in their community to support and promote community-driven research. In response, a three-day Wāhine Research Summit was organized and held in August 2024 to bring together diverse Native Hawaiian wāhine (women) researchers, educators, practitioners, and community leaders from across the pae ʻāina (throughout the Hawaiian Islands) to strengthen pilina (relationships), expand Indigenous research capacity, and catalyze epistemological sovereignty. Rather than a one-way dissemination model, the summit itself was a living dissemination space—where the work of WPRH was intentionally shared with participants not only as information, but as an invitation to adapt and carry these practices back into their respective communities. Dissemination planning was embedded in the summit design, using facilitated dialogue, collective reflection, and participatory sense-making to co-develop key messages and materials that could be shared across varied community contexts. Materials produced included a visual summary booklet, infographics rooted in moʻolelo (stories), and guiding principles for pono (goodness, uprightness, righteous) research practices—all crafted to be accessible and culturally resonant for lay audiences. We advocate for dissemination to be reframed not as a final step, but as a circular, relational process in alignment with Indigenous methodologies.
While Public Health Critical Race Praxis (PHCRP) and decolonial frameworks are increasingly applied to research design and analysis, their systematic integration into dissemination remains underexplored. The H2W research, informed by a Curandera's (ancestral healing specialist) leadership in framework education and cultural grounding, was disseminated through a community event at San Francisco State University (SFSU) collaboratively planned and implemented by a Community Advisory Team (CAT) of BIPOC transitional-age youth (ages 18-26). The project investigated how anti-racist green spaces promote healing among Black, Latinx, and Pilipinx youth in the San Francisco Bay Area. We demonstrate how specific practices—providing photo credit instead of anonymity, using audio QR codes to preserve participants' voices, displaying images on traditional cultural textiles, implementing land reflections, centering participant panels, and sharing power through rotated CAT facilitation—were systematically integrated across dissemination planning and implementation to challenge extractive academic dissemination norms while positioning BIPOC youth as primary authorities in knowledge production. The paper provides concrete examples of principle-based decision-making at each stage of dissemination planning and implementation, while honestly examining where participatory ideals encountered institutional barriers, illustrating how participatory dissemination can fundamentally shift who holds authority to produce and mobilize knowledge in ways that either reproduce or disrupt health inequities rooted in systemic racism.
Dissemination of research findings needs to not only reach and speak to other scientists; it also must reach and speak to those who can make sense of it and those who can make change with it. In essence, research and action are necessarily interdependent to drive meaningful impacts. Importantly, action often flows from authentic community engagement, which is one of the key tenets of anti-racism research and supported by the core tenets of Critical Race Theory and Participatory Action Research. Data walks are one method of engagement that involves discussing research findings with participants to gain insights and spark action to practical challenges within a community. In this article, we center data walks through three case studies that demonstrate how to plan and implement this method of equitable data dissemination. Two of the case studies present how the method is used in a variety of early childhood education sites in the Educare Network, which is working to implement a research agenda advancing racial equity. The third case study builds on the learning gleaned by working with colleagues who conducted the first two sets and extends the data walk method to a much different field, structural racism in affordable housing and homelessness. This addition serves to illustrate that data walks are discipline agnostic and can be used with a wide variety of data and audiences. We conclude by discussing actions that flowed from the data walks, methods for authentic engagement, and how to respond to power dynamics.
We describe the participatory dissemination strategy of the Iowa Vital Voices Project (IVVP), a community-driven research initiative exploring the intersection of civic engagement and public health among Latino and immigrant communities in Iowa. The IVVP integrates dissemination as a central and collaborative component of the research process, with research activities designed to support the data collection and narrative change Our dissemination strategy is grounded in community values that were identified by the Community Advisory Board (CAB) during the first 6 months of the partnership and prior to defining our research questions or study design. These values include: (1) highlighting strengths in the face of structural obstacles, (2) balancing privacy and protection with our commitment to empowerment, and (3) treating research participants as vital voices. IVVP’s multi-method approach integrates voter file analysis, community surveys, and oral histories to inform dissemination efforts. These efforts operate as an interconnected system that centers lived experience, identifies structural barriers, and lifts community voice. Dissemination activities include oral history exhibits, a depository at the Iowa Women’s Archives, visual storytelling, policy briefings , community forums, and arts-based outputs. These creative outputs are co-designed with community members to foster civic dialogue, policy advocacy, and a deeper understanding of the Latino and immigrant experience in Iowa.
Despite comprising a significant proportion of the childbearing population, few obstetric health studies have examined bisexual women of color’s perinatal healthcare priorities and needs, likely masking health disparities. In response to this gap, our team of researchers and community partners led a two-year community-engaged study to explore bisexual women of color’s perinatal healthcare experiences and create community-directed recommendations for advancing reproductive justice. Though a large body of participatory dissemination literature focuses on returning results to participants, less attention has been brought to specific techniques for co-designing dissemination activities that reach a range of audiences who can benefit from the work. In this manuscript, we document the participatory methods we employed to plan an arts-based multimedia event aimed at disseminating the findings from this study. This work was grounded in Reproductive Justice and co-designed with a community steering committee of birth workers, community leaders and activists, parents, and community-based perinatal healthcare professionals. Over a series of large and small group virtual convenings, we implemented five steps to facilitate participatory dissemination planning and equitable decision-making: 1) co-developing a guiding vision, 2) idea generation, 3) collective-decision-making through circular discussion phases, 4) co-creating art pieces and 5) rehearsing the event program. Our manuscript can serve as a guide for researchers and community partners in supporting the planning of community-driven, arts-based dissemination that reaches broad audiences. Further, our work offers teams detailed techniques for collaboration that can be successfully implemented in virtual settings.
