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Community Advisory Groups (CAGs) are used to engage communities in research, yet guidance on optimal structure, function, and sustainability is limited. This study aimed to characterize CAGs affiliated with the Oregon Health & Science University Clinical and Translational Science Award (CTSA) Community Program, develop a typology, and evaluate operational strategies and effectiveness.
Methods:
This qualitative descriptive study of 22 CAGs used CAG documents to identify CAG structure, membership, and operations. Ideal-type analysis identified patterns across cross-cutting factors: scope and specificity, primary function, institutional affiliation, and constituency.
Results:
CAGs varied substantially in structure and purpose. Four typologies emerged: (1) Project-based (n = 13) – narrow, study-specific scope, research-focused advisory roles, strong institutional control; (2) Programmatic (n = 3) – broad focus, institutionally embedded scope, strategic guidance across multiple initiatives; (3) Hybrid (n = 3) – intermediate or blended patterns, regional networks combining project-specific and broader oversight; (4) Coalition-style (n = 3) – community-driven, broad scope, decentralized, with diverse local stakeholder representation. Comparative analysis highlighted trade-offs across typologies. Project-based CAGs excelled in targeted implementation support, programmatic CAGs promoted continuity and institutional influence, coalition-style CAGs fostered community ownership and capacity-building, and hybrid models balanced scalability and local control. Formal evaluation of CAG effectiveness was limited across all types.
Conclusions:
CAGs within one CTSA displayed heterogeneous structures with designs that aligned with project goals, community context, and available resources. Flexible, purpose-driven approaches to CAGs can enhance engagement, trust, and translational impact. Future work is needed to develop empirically grounded frameworks to guide CAG design, implementation, and sustainability and advance evaluation tools.
This article presents the Zapar project, a community-commanded initiative developed in collaboration with the Atacameño Community of Toconao (northern Chile), which repositions remote sensing (RS) technologies through Indigenous governance and ethical frameworks. By embedding the CARE Principles for Indigenous Data Governance—Collective Benefit, Authority to Control, Responsibility, and Ethics—into every stage of the workflow, the project transforms RS from an extractive documentation tool into a participatory, culturally grounded practice. UAV-based photogrammetry, spatial modeling, and virtual documentation were codesigned with community members to support Indigenous-led heritage management, memory activation, and territorial governance. Beyond technical innovation, this project offers a procedural, epistemological, and ethical-governance advance in archaeological practice. Procedurally, it demonstrates how the CARE Principles can guide RS workflows through shared authority and iterative validation (1) epistemologically, by integrating Indigenous narratives that redefine site interpretation; and (2) ethically, by ensuring data sovereignty and long-term stewardship of digital heritage within the community. The Zapar project therefore provides a replicable framework for decolonizing digital archaeology, demonstrating that technological innovation can coexist with Indigenous leadership, collaborative ethics, and sustainable heritage governance.
Children’s growth extends beyond gains in height and weight: it includes non-physical achievements. This paper reviews the research conducted by the International Union for Nutritional Sciences Task Force ‘Towards a Multidimensional Approach to Child Growth’, which developed a Multidimensional Index of Child Growth (MICG) framed within a capability- and human-rights- based conceptualisation of child growth across interconnected dimensions, including physical health, love and care, mental wellbeing, participation, autonomy, mobility, and safety. Qualitative research in Bangladesh and southeastern Tanzania informed the operationalisation of the MICG, showing that caregivers understand child growth as a multidimensional capability set distributed across children, caregivers, and households. Quantitatively, we prototyped the MICG using Young Lives Survey data from Ethiopia, India, Peru, and Vietnam. The MICG reveals patterns of deprivation not captured by anthropometric indicators alone, such as compounded shortfalls in education, mobility, and mental wellbeing among rural girls in Peru, despite similar physical growth profiles. Regression and quantile analyses indicate that community participation in the design of WASH programmes is associated with higher multidimensional achievements, particularly among the most deprived children. To bridge observed achievements and unrealised potential, we extend the MICG using a Bayesian stochastic-frontier approach to estimate context-specific capability distributions and identify children at risk of being left behind. Finally, we propose a spiderweb growth chart for monitoring multidimensional child growth, complementing WHO anthropometric charts. Overall, the MICG offers an equity-sensitive tool for evaluating nutrition interventions, strengthening child growth surveillance, and advancing the Sustainable Development Goal commitment to leave no child behind.
Knowledge synthesis involves bringing together findings from individual research studies to answer a specific question or explore a particular topic, often at a global level. People with lived or living experience of health conditions or of accessing healthcare services (PWLE), such as patients and their families or friends, can provide valuable perspectives throughout this process. PWLE involvement can help shape the design and conduct of a knowledge synthesis to better reflect real-world concerns through a process called patient engagement. Patient engagement is the meaningful and active involvement of PWLE throughout the research process. While previous research shows that PWLE can contribute meaningfully when appropriate supports are in place, there is limited practical guidance on how to enact patient engagement in knowledge syntheses. This tutorial paper aims to guide researchers and PWLE who would like to engage in knowledge syntheses together. Building on existing research, our team (comprised of PWLE, researchers, and an academic librarian) shares lessons we have learned from working together throughout the stages of a knowledge synthesis. We present considerations for successful patient engagement when research teams are: (1) planning to engage, (2) recruiting PWLE, (3) establishing roles and rapport, (4) supporting capacity development, (5) conducting the knowledge synthesis, and (6) mobilizing findings. We also identify 12 common barriers to patient engagement and offer strategies to address them, alongside recommendations for integrating PWLE across every stage of the knowledge synthesis process.
This article explores Guerrilla Public History as an alternative methodology to reclaim historical narratives of the oppressed, whose history has been stripped away by violence. The author draws on regional guerrilla combat methods, Paulo Freire’s emancipatory action research and Frantz Fanon’s liberatory violence to frame this new methodology of doing public history. Based on previous examples of public history projects that the author carried within academic institutions in the global North, the article proposes this new radical methodology, applicable on the margins of the institutional framework where research is conducted within a university and/or a museum, in order to reclaim the land, call for reparation, and address injustice. At a time when funding has been grotesquely exposing its power over academic integrity, artistic expression, and freedom of speech in anything related to Palestine, this article calls on institutionally affiliated researchers to be honest about the limits of their work’s impact, and for those who wish to show their true support, to be “Muchtabek” and to act as allies of the people who will lead the revolution, rather than commodifying their struggle.
Older adults living with HIV face intersecting challenges related to aging, stigma, and healthcare navigation. Arts-based research (ABR) has the potential to support resilience and well-being in this population. To explore how participation in ABR supports older adults living with HIV in terms of empowerment, self-expression, and social connection. A participatory qualitative study was conducted with adults aged 50+ living with HIV. Participants engaged in creative workshops incorporating word mapping, visual arts, and storytelling. Data were collected through group discussions and analysis of art work. Reflexive thematic analysis was used to identify key themes in participants’ experiences. Participation in ABR fostered empowerment, self-understanding, and community connection. Four themes emerged: (1) Reclaiming narratives – challenging stereotypes of HIV and aging; (2) Creative resilience – expressing emotions and promoting healing; (3) Community and connection – reducing isolation and fostering belonging; and (4) Personal and artistic growth – skill development and therapeutic engagement. Creative expression enabled participants to communicate emotions difficult to verbalize, strengthening self-esteem and social bonds. ABR offers a valuable approach for promoting resilience, self-expression, and collective empowerment among older adults living with HIV. Incorporating creative engagement into HIV care may enhance psychosocial well-being and community connection in this population.
Participatory action research (PAR) methods effectively engage communities in identifying health priorities in low-resource settings. This study applied PAR methods during the establishment of a Health and Demographic Surveillance System (HDSS) in Gorakhpur, Uttar Pradesh, India.
Methods:
We implemented seven PAR methods across rural and urban populations: transect walks, resource mapping, social mapping, seasonal mapping, focus group discussions, semi-structured interviews, and community ranking exercises. Data were collected in September 2023 following facilitator training. Visual materials and field notes were thematically categorized, while audio-recorded interviews were transcribed, translated, and analysed with combined inductive-deductive thematic analysis. Community health priorities were quantitatively analysed through free listing, pile sorting, and ranking.
Results:
Five major themes emerged: (1) Community context revealed diverse caste compositions and essential infrastructure; (2) Health priorities included acute conditions (fever, joint pain), chronic diseases (hypertension, diabetes), healthcare access limitations, and WASH issues; (3) Key contributors to poor health encompassed inadequate WASH facilities, limited health awareness, and discrimination; (4) Healthcare access barriers included absent primary care facilities, financial constraints, limited transportation, and poor service quality; (5) Community suggestions addressed both social determinants and healthcare services, emphasizing governance participation, WASH interventions, and improved healthcare infrastructure.
Conclusions:
PAR methods successfully identified community-defined health needs and barriers, demonstrating consistency across urban and rural settings. Community members provided concrete recommendations for health system improvements, validating the importance of incorporating local voices in HDSS design. The alignment between community priorities and documented regional health challenges underscores how participatory methods can shape surveillance activities to foster sustainable health improvements and enhance governance capacities. These insights directly informed HDSS operational plans, creating a foundation for responsive and equitable health surveillance systems.
To co-create with rangatahi (young people) evidence-based eating and wellbeing guidelines for young people in Aotearoa New Zealand (NZ), informed by mātauranga Māori (traditional Māori knowledge).
Design:
Rangatahi collaborated with Māori and non-Māori experts to review existing health guidelines covering sustainable eating, physical activity, screen time, sleep and mental wellbeing and develop their own set of guidelines. Peer feedback on the draft guidelines was used to produce the final guidelines. The process integrated scientific evidence with mātauranga Māori, following tikanga Māori (Māori custom) to ensure a culturally centred process.
Setting:
Wānanga (learning workshops) were held at a local marae (traditional meeting house), and feedback presentations were held in four secondary schools in Hawke’s Bay, NZ.
Participants:
Seventeen rangatahi from four schools with high Māori student enrolment participated in the wānanga, and ninety-four students provided peer feedback through surveys.
Results:
The rangatahi created ten eating and ten wellbeing guideline messages. These messages were invitational (beginning ‘Let’s try to…’) acknowledging the challenging journey for many rangatahi from current to recommended behaviours. Only one quantification (8–10 h of sleep) was included. Three eating and three physical activity guidelines incorporated the concepts of ‘mauri’ (life force). The guidelines addressed contemporary issues including sustainable eating, ultra-processed foods, social dimensions of eating and physical activity, screen time and cyberbullying. They also emphasised respect, rights and responsibilities, concluding with a motivational whakatauki (proverb) about aspirations.
Conclusions:
Innovative, relevant and contemporary eating and wellbeing guidelines have been successfully co-created by rangatahi Māori for all young people across NZ.
Implementation science increasingly uses participatory systems modeling (PSM) approaches to handle the complexity inherent to implementation science issues. To support the process of integrating PSM with implementation science, we aimed to understand and explicate the benefits, facilitators, and future needs of applying PSM to implementation research.
Methods:
We conducted semi-structured qualitative interviews with 23 researchers (n = 18) and practitioners (n = 5). We purposively sampled participants and identified additional participants through recommendations. Interviews were inductively analyzed. Key concepts were identified via iterative description, comparison, and conceptualization.
Results:
Engagement with people in the system was typically focused in earlier stages of PSM approaches, while engagement with decision makers occurred throughout a project. PSM approaches benefited researchers (e.g., improving the relevance of research) and practitioners (e.g., promoting systems thinking). Both benefited from the visual, intuitive nature of PSM and the ability of PSM to reflect partners’ input transparently. Facilitators included trusting relationships and conducting practice-driven research. Participants emphasized the need to improve funding opportunities for engagement and increase training in systems modeling facilitation.
Conclusions:
Our findings can help move the field towards fully partnered and impactful implementation research that addresses the systems problems. While PSM approaches are promising, if not done according to best practices of partnered research, they will reproduce existing power imbalances and consultative engagement patterns between community partners and academics.
People with severe mental Illness (SMI) bear an excessive burden of periodontal disease, which can exacerbate their mental and physical multimorbidity. Therefore, improving and sustaining good oral hygiene is key.
Aims
To co-create a theory-driven oral hygiene intervention for people with SMI.
Method
A two-stage, eight-step method was followed drawing on the Behaviour Change Wheel. Stage 1, understanding the problem, involved evidence review and stakeholder consultations. Stage 2 focused on identifying theoretical barriers and facilitators through semi-structured interviews (n = 20) and co-designing the intervention content alongside people with SMI, carers, primary care, mental health and dental professionals and clinical leads. Interview data were analysed using framework analysis. Identified barriers and facilitators were mapped to the Capability, Opportunity, Motivation–Behaviour model and Theoretical Domain Framework. Intervention functions, policy categories and behaviour change techniques were identified and mapped accordingly.
Results
The target behaviour of twice-daily toothbrushing was addressed through understanding the consequences of improving oral health and brushing, forming a brushing habit, brushing instructions and demonstration with consideration of cognitive capacity and exploring the need for financial and social support. Recommendations for intervention delivery included integrating it into the SMI physical health checks, training and remunerating primary care and mental health professionals to deliver it as part of a personalised and integrated care approach to rebuilding broader lifestyle routines; and maintaining engagement through follow-up appointments.
Conclusions
This is the first study to co-create a theory-driven toothbrushing intervention for people with SMI, delivered by primary care and mental health professionals.
This chapter outlines the basic principles of qualitative research in the context of mental health. We begin by discussing the philosophy of reality and knowledge production, demonstrating how these discussions filter through to every aspect of qualitative research. We then explain the fundamental elements of qualitative research, including how to formulate a research question, different methodological approaches, the application of qualitative methods in clinical trials, data collection, sampling, and analysis. This chapter also focuses on how qualitative research can make a change, providing unique insights on how to influence policy and engage government. We devote a substantial part of the chapter to research ethics and reflexivity, summarising not only basic bioethical principles, but thinking about ethics from an anti-colonial perspective. We end the chapter by exploring what constitutes high quality qualitative research, laying out some guiding principles and practices for promoting quality. Our aim with this chapter is not to provide an exhaustive account of qualitative research, rather to offer guidance and inspiration to fledgling researchers who would like to find out more.
Combining key elements of classical and constructivist approaches to representation, this article suggests a novel reconceptualisation of political representation. Developed through participatory agency research with people in socio-economically difficult situations and anchored in people’s lived experiences and sense-making processes, the representative relationship is redefined as a pragmatic and solution-oriented partnership between representatives and the represented. Expanding the classical Pitkinian model, it enables representatives to be better informed about how to address peoples’ concerns. In doing so, it advances the notion of dynamic political representation, where the represented are not passive principals but active partners in decision-making. While we uphold the classical principle of acting in the interests of the represented, we reconceptualise these interests as dynamic and continuously evolving – a perspective consistent with constructivist thought. This research aligns with scholarly calls to rethink representation and revise the roles of the representatives and the represented, fostering meaningful and effective engagement. Our empirical findings highlight the urgency of reform for people in socio-economically difficult situations and underscores the broader relevance of these insights, in a context of increasing legitimacy deficits and rising discontent with current modes of representation in contemporary democracies.
The hospital setting is often perceived as slow to change. While employee-driven approaches offer a promising alternative to traditional top-down methods, guidance is limited. This study provides a description and formative evaluation of an employee-driven working group (WG) approach to tailor ward-specific measures to improve care in the dying phase. The aim is to evaluate the WG process and offer practical insights for transferability to other hospitals.
Methods
Formative mixed-methods evaluation of a WG process to tailor ward-specific evidence-informed measures on 10 wards outside specialized palliative care at 2 German medical centers. To analyze factors relevant for the WG process, the Consolidated Framework for Implementation Research 2.0 was applied. Data included baseline evaluation (medical record analysis, staff survey and focus groups, informal caregiver interviews), WG protocols, and an online survey with WG participants.
Results
Multiprofessional WGs were established on all hospital wards, with an average of 7 meetings per ward within 1 year and 4 participants per meeting. Adapting the process to participants’ wishes and needs were crucial, particularly regarding the desired degree of external input. We identified 4 barriers (e.g. declining participation, institutional limits) and 7 facilitators (e.g. involvement of staff in leading positions, multiprofessional composition). The WGs tailored 34 measures, e.g. team meetings to improve communication within the team. Participants’ views were generally positive: 91% felt able to share their thoughts, 66% were satisfied with the outcome, and 77% would participate again.
Significance of results
The employee-driven approach was feasible and useful for tailoring ward-specific measures. However, integrating top-down elements proved to be beneficial. The identified barriers and facilitators provide insights for transferring an employee-driven approach to other hospitals to improve care in the dying phase outside specialized palliative care settings.
Clinical trial registration
The study was registered in the German Clinical Trials Register (DRKS00025405).
Expanding crop diversity is essential to address the imminent challenges of agriculture. This is especially true for organic farming, which relies on locally adapted species and varieties. Recently, participatory research approaches have emerged as effective means to support this endeavour. In this study, we collaborated with several stakeholders in the Lyon region, France, to evaluate three minor species related to common wheat (Triticum aestivum subsp. aestivum): einkorn (Triticum monococcum subsp. monococcum), emmer (Triticum turgidum subsp. dicoccum) and spelt (Triticum aestivum subsp. spelta (L.) Thell). First, we assessed the agronomic characteristics of each species, highlighting a distinction of einkorn that was associated with high tillering, high protein content, a long phenological cycle, small kernels and low relative yields. Second, we compared intra-species variabilities, revealing greater variation in emmer and spelt. Lastly, outcomes of the participatory approach, including testing adaptive methods and fostering collective learning, may interest other participatory research groups.
This article explores the potentials of intergenerational collaboration as a long-term research strategy for shifting social and political imaginaries around climate change. It brings together academics and youth researchers who began working together on the Climate Change and Me project in 2014, along with colleagues who joined them for a public panel, book launch and exhibition ten years later. Climate Change and Me was the first large-scale study of climate change education applying a child- and youth-framed methodology, and has led to numerous exhibitions, curriculum resources, digital platforms, and publications co-created with children and young people. This article gives voice to young people’s reflections on the impact of their involvement with this project a decade on, drawing on the transcript of a public panel conversation at the Design Hub Gallery in Naarm (Melbourne). It explores how young people’s early experiences as child researchers have intersected with political, social and educational change across time, while opening new conversations with intergenerational colleagues working in related areas of climate justice education, activism and research.
While normative theories of participatory democracy and practical experiences of participatory research share a common democratic commitment, the two fields have emerged and to date exist in isolation from each other. This article bridges this divide and asks what participatory democracy and participatory research can learn from one another. It argues that participatory democracy can learn how to realize its own democratic ideals within its research practice and participatory research can deepen its normative commitment by connecting its practices to a larger participatory vision. The article illustrates this by engaging with three examples in which participatory democracy researchers conduct participatory research projects. It finally reflects critically on how the shared participatory commitments of both fields can be realized within the neoliberal university embedded in competitive market economies.
To explore the perceptions, drivers and potential solutions to the consumption of unhealthy, ultra-processed foods (UPF) and foods high in fat, salt and sugar (HFSS) and their contribution to the double burden of malnutrition among adolescents living in urban slums, Kenya.
Design:
Qualitative participatory research, through Photovoice, group discussions and community dialogues. Inductive, thematic analysis was undertaken.
Setting:
Three major slums, Nairobi.
Participants:
Adolescents 10–19 years (n 102: 51 boys, 51 girls) and adults (n 62).
Results:
UPF/HFSS consumption emerged as a predominant theme on foods commonly consumed by adolescents, and the causes of undernutrition and overweight/obesity. Adolescents described UPF/HFSS as junk, oily, sugary or foods with chemicals and associated UPF/HFSS consumption with undernutrition, obesity and non-communicable diseases. They perceived UPF/HFSS as modern, urban, classy and appealing to young people and minimally processed foods as boring and primitive, for older people, and those in rural areas. Individual-level drivers of UPF/HFSS consumption were organoleptic attributes (taste/aroma), body size/shape, illicit drug use, convenience and adolescents’ autonomy. Social environment drivers were peer pressure and social status/aspirations. Physical environment drivers were UPF/HFSS availability and accessibility in the slums. Education on healthy eating and the adverse effects of consuming UPF/HFSS, through existing structures (youth groups, school, community health strategy), was proposed as a potential solution to UPF/HFSS consumption.
Conclusion:
UPF/HFSS were perceived as associated with poor nutrition and health, yet were preferred over unprocessed/minimally processed foods. Interventions to promote healthy diets beyond raising awareness are important, while addressing the underlying perceptions and drivers of UPF/HFSS consumption at the individual level and in the social and physical food environments.
This paper, co-authored by two adult academics and three young researchers aged 11 to 16, investigates the authors’ collective experiences in a participatory research project about growing up multilingual with Chinese heritage and migration background, where race and racism emerged as key themes. Drawing on critical dialectical pluralism and the concept of “reflexivities of discomfort,” we explore how co-constructing research with children and young people can enrich the research process. Despite the intricate and often opaque nature of discussing racism, especially anti-Asian racism, with children from migration backgrounds, this study advocates for participatory research as a critical tool for uncovering these complexities, paving the way for more open and meaningful conversations. In collaboration with young researchers, we reevaluate the role of research and researchers in discussing racism, (de)construct children as experts of their racialized experiences, and imagine the future of researching racism with children through what we call “collective reflexivity”—a practice of open discussions that highlight young people’s positionalities, experiences, and insights. Through practices that protect individuality and value personal experience, our work makes a methodological contribution by offering “collective reflexivity” and co-authorship as a pathway that ensures children are not viewed as “representatives,” but valued for their positionalities, encouraging more engaged and critical conversations on race and racism with them.
The devastating impacts of the COVID-19 pandemic highlighted the missing voices of families and residents in long-term care (LTC) decision-making and policy processes. Family and resident councils constitute one method of raising these voices, but there is currently a gap in evidence of how to promote the effectiveness of these councils. We conducted five focus groups and two interviews with LTC home leaders, residents, family members, and advocates in British Columbia using a participatory approach integrating knowledge-users throughout the research process. Using a framework analysis, we found modifiable (communication, structure, recruitment/engagement, council leadership, culture/attitudes, and resources/supports) and non-modifiable factors (medical complexity of residents and short lengths of stay) affecting council effectiveness. We discuss strategies implemented by knowledge-users to address modifiable effectiveness factors and construct a preliminary tool (a 35-question survey) that operationalizes and identifies areas that can increase council effectiveness in practice to ensure that their voices are heard in LTC decision making.
This book offers a critical overview of participatory methods in health research with adolescents and youth. It introduces participatory methodology as an ethos and practice, before covering specific paradigms and methods, including participatory action research, community-based participatory research, co-design, co-creation, participatory design, peer research, youth as researchers, integrated knowledge translation, and youth-adult partnerships. Specific technologies are also covered, such as mobile apps and video games, sonification, photovoice, visual mapping, and Internet-based approaches. A guidebook to both theory and methods, it demonstrates technology's potential to drive impactful research and inclusive study design.