participatory action research study design

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• Published: 27 April 2023

Participatory action research

• Flora Cornish   ORCID: orcid.org/0000-0002-3404-9385 1 ,
• Nancy Breton   ORCID: orcid.org/0000-0002-8388-0458 1 ,
• Ulises Moreno-Tabarez   ORCID: orcid.org/0000-0002-3504-8624 2 ,
• Jenna Delgado 3 ,
• Mohi Rua 4 ,
• Ama de-Graft Aikins 5 &
• Darrin Hodgetts 6  

Nature Reviews Methods Primers volume  3 , Article number:  34 ( 2023 ) Cite this article

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Participatory action research (PAR) is an approach to research that prioritizes the value of experiential knowledge for tackling problems caused by unequal and harmful social systems, and for envisioning and implementing alternatives. PAR involves the participation and leadership of those people experiencing issues, who take action to produce emancipatory social change, through conducting systematic research to generate new knowledge. This Primer sets out key considerations for the design of a PAR project. The core of the Primer introduces six building blocks for PAR project design: building relationships; establishing working practices; establishing a common understanding of the issue; observing, gathering and generating materials; collaborative analysis; and planning and taking action. We discuss key challenges faced by PAR projects, namely, mismatches with institutional research infrastructure; risks of co-option; power inequalities; and the decentralizing of control. To counter such challenges, PAR researchers may build PAR-friendly networks of people and infrastructures; cultivate a critical community to hold them to account; use critical reflexivity; redistribute powers; and learn to trust the process. PAR’s societal contribution and methodological development, we argue, can best be advanced by engaging with contemporary social movements that demand the redressingl of inequities and the recognition of situated expertise.

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Introduction.

For the authors of this Primer, participatory action research (PAR) is a scholar–activist research approach that brings together community members, activists and scholars to co-create knowledge and social change in tandem 1 , 2 . PAR is a collaborative, iterative, often open-ended and unpredictable endeavour, which prioritizes the expertise of those experiencing a social issue and uses systematic research methodologies to generate new insights. Relationships are central. PAR typically involves collaboration between a  community with lived experience of a social issue and professional researchers, often based in universities, who contribute relevant knowledge, skills, resources and networks. PAR is not a research process driven by the imperative to generate knowledge for scientific progress, or knowledge for knowledge’s sake; it is a process for generating knowledge-for-action and knowledge-through-action, in service of goals of specific communities. The position of a PAR scholar is not easy and is constantly tested, as PAR projects and roles straddle university and community boundaries, involving unequal  power relations and multiple, sometimes conflicting interests. This Primer aims to support researchers in preparing a PAR project, by providing a scaffold to navigate the processes through which PAR can help us to collaboratively envisage and enact emancipatory futures.

We consider PAR an emancipatory form of scholarship 1 . Emancipatory scholarship is driven by interest in tackling injustices and building futures supportive of human thriving, rather than objectivity and neutrality. It uses research not primarily to communicate with academic experts but to inform grassroots collective action. Many users of PAR aspire to projects of liberation and/or transformation . Users are likely to be critical of research that perpetuates oppressive power relations, whether within the research relationships themselves or in a project’s messages or outcomes, often aiming to trouble or transform power relations. PAR projects are usually concerned with developments not only in knowledge but also in action and in participants’ capacities, capabilities and performances.

PAR does not follow a set research design or particular methodology, but constitutes a strategic rallying point for collaborative, impactful, contextually situated and inclusive efforts to document, interpret and address complex systemic problems 3 . The development of PAR is a product of intellectual and activist work bridging universities and communities, with separate genealogies in several Indigenous 4 , 5 , Latin American 6 , 7 , Indian 8 , African 9 , Black feminist 10 , 11 and Euro-American 12 , 13 traditions.

PAR, as an authoritative form of enquiry, became established during the 1970s and 1980s in the context of anti-colonial movements in the Global South. As anti-colonial movements worked to overthrow territorial and economic domination, they also strived to overthrow symbolic and epistemic injustices , ousting the authority of Western science to author knowledge about dominated peoples 4 , 14 . For Indigenous scholars, the development of PAR approaches often comprised an extension of Indigenous traditions of knowledge production that value inclusion and community engagement, while enabling explicit engagements with matters of power, domination and representation 15 . At the same time, exchanges between Latin American and Indian popular education movements produced Orlando Fals Borda’s articulation of PAR as a paradigm in the 1980s. This orientation prioritized people’s participation in producing knowledge, instead of the positioning of local populations as the subject of knowledge production practices imposed by outside experts 16 . Meanwhile, PAR appealed to those inspired by Black and postcolonial feminists who challenged established knowledge hierarchies, arguing for the wisdom of people marginalized by centres of power, who, in the process of survivance, that is, surviving and resisting oppressive social structures, came to know and deconstruct those structures acutely 17 , 18 .

Some Euro-American approaches to PAR are less transformational and more reformist, in the action research paradigm, as developed by Kurt Lewin 19 to enhance organizational efficacy during and after World War II. Action research later gained currency as a popular approach for professionals such as teachers and nurses to develop their own practices, and it tended to focus on relatively small-scale adjustments within a given institutional structure, instead of challenging power relations as in anti-colonial PAR 13 , 20 . In the late twentieth century, participatory research gained currency in academic fields such as participatory development 21 , 22 , participatory health promotion 23 and creative methods 24 . Although participatory research includes participants in the conceptualization, design and conduct of a project, it may not prioritize action and social change to the extent that PAR does. In the early twenty-first century, the development of PAR is occurring through sustained scholarly engagements in anti-colonial 5 , 25 , abolitionist 26 , anti-racist 27 , 28 , gender-expansive 29 , climate activist 30 and other radical social movements.

This Primer bridges these traditions by looking across them for mutual learning but avoiding assimilating them. We hope that readers will bring their own activist and intellectual heritages to inform their use of PAR and adapt and adjust the suggestions we present to meet their needs.

Four key principles

Drawing across its diverse origins, we characterize PAR by four key principles. The first is the authority of direct experience. PAR values the expertise generated through experience, claiming that those who have been marginalized or harmed by current social relations have deep experiential knowledge of those systems and deserve to own and lead initiatives to change them 3 , 5 , 17 , 18 . The second is knowledge in action. Following the tradition of action research, it is through learning from the experience of making changes that PAR generates new knowledge 13 . The third key principle is research as a transformative process. For PAR, the research process is as important as the outcomes; projects aim to create empowering relationships and environments within the research process itself 31 . The final key principle is collaboration through dialogue. PAR’s power comes from harnessing the diverse sets of expertise and capacities of its collaborators through critical dialogues 7 , 8 , 32 .

Because PAR is often unfamiliar, misconstrued or mistrusted by dominant scientific 33 institutions, PAR practitioners may find themselves drawn into competitions and debates set on others’ terms, or into projects interested in securing communities’ participation but not their emancipation. Engaging communities and participants in participatory exercises for the primary purpose of advancing research aims prioritized by a university or others is not, we contend, PAR. We encourage PAR teams to articulate their intellectual and political heritage and aspirations, and agree their core principles, to which they can hold themselves accountable. Such agreements can serve as anchors for decision-making or counterweights to the pull towards inegalitarian or extractive research practices.

Aims of the Primer

The contents of the Primer are shaped by the authors’ commitment to emancipatory, engaged scholarship, and their own experience of PAR, stemming from their scholar-activism with marginalized communities to tackle issues including state neglect, impoverishment, infectious and non-communicable disease epidemics, homelessness, sexual violence, eviction, pollution, dispossession and post-disaster recovery. Collectively, our understanding of PAR is rooted in Indigenous, Black feminist and emancipatory education traditions and diverse personal experiences of privilege and marginalization across dimensions of race, class, gender, sexuality and disability. We use an inclusive understanding of PAR, to include engaging, emancipatory work that does not necessarily use the term PAR, and we aim to showcase some of the diversity of scholar-activism around the globe. The contents of this Primer are suggestions and reflections based on our own experience of PAR and of teaching research methodology. There are multiple ways of conceptualizing and conducting a PAR project. As context-sensitive social change processes, every project will pose new challenges.

This Primer is addressed primarily to university-based PAR researchers, who are likely to work in collaboration with members of communities or organizations or with activists, and are accountable to academic audiences as well as to community audiences. Much expertise in PAR originates outside universities, in community groups and organizations, from whom scholars have much to learn. The Primer aims to familiarize scholars new to PAR and others who may benefit with PAR’s key principles, decision points, practices, challenges, dilemmas, optimizations, limitations and work-arounds. Readers will be able to use our framework of ‘building blocks’ as a guide to designing their projects. We aim to support critical thinking about the challenges of PAR to enable readers to problem-solve independently. The Primer aims to inspire with examples, which we intersperse throughout. To illustrate some of the variety of positive achievements of PAR projects, Box  1 presents three examples.

Box 1 What does participatory action research do?

The Tsui Anaa Project 60 in Accra, Ghana, began as a series of interviews about diabetes experiences in one of Accra’s oldest indigenous communities, Ga Mashie. Over a 12-year period, a team of interdisciplinary researchers expanded the project to a multi-method engagement with a wide range of community members. University and community co-researchers worked to diagnose the burden of chronic conditions, to develop psychosocial interventions for cardiovascular and associated conditions and to critically reflect on long-term goals. A health support group of people living with diabetes and cardiovascular conditions, called Jamestown Health Club (JTHC), was formed, met monthly and contributed as patient advocates to community, city and national non-communicable disease policy. The project has supported graduate collaborators with mixed methods training, community engagement and postgraduate theses advancing the core project purposes.

Buckles, Khedkar and Ghevde 39 were approached by members of the Katkari tribal community in Maharashtra, India, who were concerned about landlords erecting fences around their villages. Using their institutional networks, the academics investigated the villagers’ legal rights to secure tenure and facilitated a series of participatory investigations, through which Katkari villagers developed their own understanding of the inequalities they faced and analysed potential action strategies. Subsequently, through legal challenges, engagement with local politics and emboldened local communities, more than 100 Katkari communities were more secure and better organized 5 years later.

The Morris Justice Project 74 in New York, USA, sought to address stop-and-frisk policing in a neighbourhood local to the City University of New York, where a predominantly Black population was subject to disproportionate and aggressive policing. Local residents surveyed their neighbours to gather evidence on experiences of stop and frisk, compiling their statistics and experiences and sharing them with the local community on the sidewalk, projecting their findings onto public buildings and joining a coalition ‘Communities United for Police Reform’, which successfully campaigned for changes to the city’s policing laws.

Experimentation

This section sets out the core considerations for designing a PAR project.

Owing to the intricacies of working within complex human systems in real time, PAR practitioners do not follow a highly proceduralized or linear set of steps 34 . In a cyclical process, teams work together to come to an initial definition of their social problem, design a suitable action, observe and gather information on the results, and then analyse and reflect on the action and its impact, in order to learn, modify their understanding and inform the next iteration of the research–action cycle 3 , 35 (Fig.  1 ). Teams remain open throughout the cycle to repeating or revising earlier steps in response to developments in the field. The fundamental process of building relationships occurs throughout the cycles. These spiral diagrams orient readers towards the central interdependence of processes of participation, action and research and the nonlinear, iterative process of learning by doing 3 , 36 .

Participatory action research develops through a series of cycles, with relationship building as a constant practice. Cycles of research text adapted from ref. 81 , and figure adapted with permission from ref. 82 , SAGE.

Building blocks for PAR research design

We present six building blocks to set out the key design considerations for conducting a PAR project. Each PAR team may address these building blocks in different ways and with different priorities. Table  1 proposes potential questions and indicative goals that are possible markers of progress for each building block. They are not prescriptive or exhaustive but may be a useful starting point, with examples, to prompt new PAR teams’ planning.

Building relationships

‘Relationships first, research second’ is our key principle for PAR project design 37 . Collaborative relationships usually extend beyond a particular PAR project, and it is rare that one PAR project finalizes a desired change. A researcher parachuting in and out may be able to complete a research article, with community cooperation, but will not be able to see through the hard graft of a programme of participatory research towards social change. Hence, individual PAR projects are often nested in long-term collaborations. Such collaborations are strengthened by institutional backing in the form of sustainable staff appointments, formal recognition of the value of university–community partnerships and provision of administrative support. In such a supportive context, opportunities can be created for achievable shorter-term projects to which collaborators or temporary researchers may contribute. The first step of PAR is sometimes described as the entry, but we term this foundational step building relationships to emphasize the longer-term nature of these relationships and their constitutive role throughout a project. PAR scholars may need to work hard with and against their institutions to protect those relationships, monitoring potential collaborations for community benefit rather than knowledge and resource extraction. Trustworthy relationships depend upon scholars being aware, open and honest about their own interests and perspectives.

The motivation for a PAR project may come from university-based or community-based researchers. When university researchers already have a relationship with marginalized communities, they may be approached by community leaders initiating a collaboration 38 , 39 . Alternatively, a university-based researcher may reach out to representatives of communities facing evident problems, to explore common interests and the potential for collaboration 40 . As Indigenous scholars have articulated, communities that have been treated as the subjects or passive objects of research, commodified for the scientific knowledge of distant elites, are suspicious of research and researchers 4 , 41 . Scholars need to be able to satisfy communities’ key questions: Who are you? Why should we trust you? What is in it for our community? Qualifications, scholarly achievements or verbal reassurances are less relevant in this context than past or present valued contributions, participation in a heritage of transformational action or evidence of solidarity with a community’s causes. Being vouched for by a respected community member or collaborator can be invaluable.

Without prior relationships one can start cold, as a stranger, perhaps attending public events, informal meeting places or identifying organizations in which the topic is of interest, and introducing oneself. Strong collaborative relationships are based on mutual trust, which must be earned. It is important to be transparent about our interests and to resist the temptation to over-promise. Good PAR practitioners do not raise unrealistic expectations. Box  2 presents key soft skills for PAR researchers.

Positionality is crucial to PAR relationships. A university-based researcher’s positionalities (including, for example, their gender, race, ethnicity, class, politics, skills, age, life stage, life experiences, assumptions about the problem, experience in research, activism and relationship to the topic) interact with the positionalities of community co-researchers, shaping the collective definition of the problem and appropriate solutions. Positionalities are not fixed, but can be changing, multiple and even contradictory 42 . We have framed categories of university-based and community-based researchers here, but in practice these positionings of ‘insiders’ and ‘outsiders’ are often more complex and shifting 43 . Consideration of diversity is important when building a team to avoid  tokenism . For example, identifying which perspectives are included initially and why, and whether members of the team or gatekeepers have privileged access owing to their race, ethnicity, class, gender and/or able-bodiedness.

The centring of community expertise in PAR does not mean that a community is ‘taken for granted’. Communities are sites of the production of similarity and difference, equality and inequalities, and politics. Knowledge that has the status of common sense may itself reproduce inequalities or perpetuate harm. Relatedly, strong PAR projects cultivate  reflexivity 44 among both university-based and community-based researchers, to enable a critical engagement with the diversity of points of view, positions of power and stakes in a project. Developing reflexivity may be uncomfortable and challenging, and good PAR projects create a supportive culture for processing such discomfort. Supplementary files  1 and   2 present example exercises that build critical reflexivity.

Box 2 Soft skills of a participatory action researcher

Respect for others’ knowledge and the expertise of experience

Humility and genuine kindness

Ability to be comfortable with discomfort

Sharing power; ceding control

Trusting the process

Acceptance of uncertainty and tensions

Openness to learning from collaborators

Self-awareness and the ability to listen and be confronted

Willingness to take responsibility and to be held accountable

Confidence to identify and challenge power relations

Establishing working practices

Partnerships bring together people with different sets of norms, assumptions, interests, resources, time frames and working practices, all nested in institutional structures and infrastructures that cement those assumptions. University-based researchers often take their own working practices for granted, but partnership working calls for negotiation. Academics often work with very extended time frames for analysis, writing and review before publication, hoping to contribute to gradually shifting agendas, discourses and politics 45 . The urgency of problems that face a community often calls for faster responsiveness. Research and management practices that are normal in a university may not be accessible to people historically marginalized through dimensions that include disability, language, racialization, gender, literacy practices and their intersections 46 . Disrupting historically entrenched power dynamics associated with these concerns can raise discomfort and calls for skilful negotiation. In short, partnership working is a complex art, calling for thoughtful design of joint working practices and a willingness to invest the necessary time.

Making working practices and areas of tension explicit is one useful starting point. Not all issues need to be fully set out and decided at the outset of a project. A foundation of trust, through building relationships in building block 1, allows work to move ahead without every element being pinned down in advance. Supplementary file  1 presents an exercise designed to build working relationships and communicative practices.

Establishing a common understanding of the issue

Co-researchers identify a common issue or problem to address. University-based researchers tend to justify the selection of the research topic with reference to a literature review, whereas in PAR, the topic must be a priority for the community. Problem definition is a key step for PAR teams, where problem does not necessarily mean something negative or a deficit, but refers to the identification of an important issue at stake for a community. The definition of a problem, however, is not always self-evident, and producing a problem definition can be a valid outcome of PAR. In the example of risks of eviction from Buckles, Khedkar and Ghevde 39 (Box  1 ), a small number of Katkari people first experienced the problem in terms of landlords erecting barbed wire fences. Other villages did not perceive the risk of eviction as a big problem compared with their other needs. Facilitating dialogues across villages about their felt problems revealed how land tenure was at the root of several issues, thus mobilizing interest. Problem definitions are political; they imply some forms of action and not others. Discussion and reflexivity about the problem definition are crucial. Compared with other methodologies, the PAR research process is much more public from the outset, and so practices of making key steps explicit, shareable, communicable and negotiable are essential. Supplementary file  3 introduces two participatory tools for collective problem definition.

Consideration of who should be involved in problem definition is important. It may be enough that a small project team works closely together at this stage. Alternatively, group or public meetings may be held, with careful facilitation 5 . Out of dialogue, a PAR team aims to agree on an actionable problem definition, responding to the team’s combination of skills, capacities and priorities. A PAR scholar works across the university–community boundary and thus is accountable to both university values and grassroots communities’ values. PAR scholars should not deny or hide the multiple demands of the role because communities with experience of marginalization are attuned to being manipulated. Surfacing interests and constraints and discussing these reflexively is often a better strategy. Creativity may be required to design projects that meet both academic goals (such as when a project is funded to produce certain outcomes) and the community’s goals.

For example, in the context of a PAR project with residents of a public housing neighbourhood scheduled for demolition and redevelopment, Thurber and colleagues 47 describe how they overcame differences between resident and academic researchers regarding the purposes of their initial survey. The academic team members preferred the data to be anonymous, to maximize the scientific legitimacy of their project (considered valuable for their credibility to policymakers), whereas the resident team wanted to use the opportunity to recruit residents to their cause, by collecting contact details. The team discussed their different objectives and produced the solution of two-person survey teams, one person gathering anonymous data for the research and a second person gathering contact details for the campaign’s contact list.

Articulating research questions is an early milestone. PAR questions prioritize community concerns, so they may differ from academic-driven research questions. For example, Buckles, Khedkar and Ghevde 39 facilitated a participatory process that developed questions along the lines of: What are the impacts of not having a land title for Katkari people? How will stakeholders respond to Katkari organizing, and what steps can Katkari communities take towards the goal of securing tenure? In another case, incarcerated women in New York state, USA, invited university academics to evaluate a local college in prison in the interest of building an empirical argument for the value of educational opportunities in prisons 38 , 48 Like other evaluations, it asked: “What is the impact of college on women in prison?” But instead of looking narrowly at the impact on re-offending as the relevant impact (as prioritized by politicians and policymakers), based on the incarcerated women’s advice, the evaluation tracked other outcomes: women’s well-being within the prison; their relationships with each other and the staff; their children; their sense of achievement; and their agency in their lives after incarceration.

As a PAR project develops, the problem definition and research questions are often refined through the iterative cycles. This evolution does not undermine the value of writing problem definitions and research questions in the early stages, as a collaboration benefits from having a common reference point to build from and from which to negotiate.

Observing, gathering and generating materials

With a common understanding of the problem, PAR teams design ways of observing the details and workings of this problem. PAR is not prescriptive about the methods used to gather or generate observations. Projects often use qualitative methods, such as storytelling, interviewing or ethnography, or participatory methods, such as body mapping, problem trees, guided walks, timelines, diaries, participatory photography and video or participatory theatre. Gathering quantitative data is an option, particularly in the tradition of participatory statistics 49 . Chilisa 5 distinguishes sources of spatial data, time-related data, social data and technical data. The selected methods should be engaging to the community and the co-researchers, suited to answering the research questions and supported by available professional skills. Means of recording the process or products, and of storing those records, need to be agreed, as well as ethical principles. Developing community members’ research skills for data collection and analysis can be a valued contribution to a PAR project, potentially generating longer-term capacities for local research and change-making 50 .

Our selection of data generation methods and their details depends upon the questions we ask. In some cases, methods to explore problem definitions and then to brainstorm potential actions, their risks and benefits will be useful (Supplementary file  3 ). Others may be less prescriptive about problems and solutions, seeking to explore experience in an open-ended way, as a basis for generating new understandings (see Supplementary file  2 for an example reflective participatory exercise).

Less-experienced practitioners may take a naive approach to PAR, which assumes that knowledge should emerge solely from an authentic community devoid of outside ideas. More established PAR researchers, however, work consciously to combine and exchange skills and knowledge through dialogue. Together with communities, we want to produce effective products, and we recognize that doing so may require specific skills. In Marzi’s 51 participatory video project with migrant women in Colombia, she engaged professional film-makers to provide the women with training in filming, editing and professional film production vocabulary. The women were given the role of directors, with the decision-making power over what to include and exclude in their film. In a Photovoice project with Black and Indigenous youth in Toronto, Canada, Tuck and Habtom 25 drew on their prior scholar–activist experience and their critical analysis of scholarship of marginalization, which often uses tropes of victimhood, passivity and sadness. Instead of repeating narratives of damage, they intended to encourage desire-based narratives. They supported their young participants to critically consider which photographs they wanted to include or exclude from public representations. Training participants to be expert users of research techniques does not devalue their existing expertise and skills, but takes seriously their role in co-producing valid, critical knowledge. University-based researchers equally benefit from training in facilitation methods, team development and the history and context of the community.

Data generation is relational, mediated by the positionalities of the researchers involved. As such, researchers position themselves across boundaries, and need to have, or to develop, skills in interpreting across boundaries. In the Tsui Anaa Project (Box  1 ) in Ghana, the project recruited Ga-speaking graduate students as researchers; Ga is the language most widely spoken in the community. The students were recruited not only for their language skills, but also for their Ga cultural sensibilities, reflected in their sense of humour and their intergenerational communicative styles, enabling fluid communication and mutual understanding with the community. In turn, two community representatives were recruited as advocates to represent patient perspectives across university and community boundaries.

University-based researchers trained in methodological rigour may need reminders that the process of a PAR project is as important as the outcome, and is part of the outcome. Facilitation skills are the most crucial skills for PAR practitioners at this stage. Productive facilitation skills encourage open conversation and collective understandings of the problem at hand and how to address it. More specifically, good facilitation requires a sensitivity to the ongoing and competing social context, such as power relations, within the group to help shift power imbalances and enable participation by all 52 . Box  3 presents a PAR project that exemplifies the importance of relationship building in a community arts project.

Box 3 Case study of the BRIDGE Project: relationship building and collective art making as social change

The BRIDGE Project was a 3-week long mosaic-making and dialogue programme for youth aged 14–18 years, in Southern California. For several summers, the project brought together students from different campuses to discuss inclusion, bullying and community. The goal was to help build enduring relationships among young people who otherwise would not have met or interacted, thereby mitigating the racial tensions that existed in their local high schools.

Youth were taught how to make broken tile mosaic artworks, facilitated through community-building exercises. After the first days, as relationships grew, so did the riskiness of the discussion topics. Youth explored ideas and beliefs that contribute to one’s individual sense of identity, followed by discussion of wider social identities around race, class, sex, gender, class, sexual orientation and finally their identities in relationship to others.

The art-making process was structured in a manner that mirrored the building of their relationships. Youth learned mosaic-making skills while creating individual pieces. They were discouraged from collaborating with anyone else until after the individual pieces were completed and they had achieved some proficiency. When discussions transitioned to focus on the relationship their identities had to each other, the facilitators assisted them in creating collaborative mosaics with small groups.

Staff facilitation modelled the relationship-building goal of the project. The collaborative art making was built upon the rule that no one could make any changes without asking for and receiving permission from the person or people who had placed the piece (or pieces) down. To encourage participants to engage with each other it was vital that they each felt comfortable to voice their opinions while simultaneously learning how to be accountable to their collaborators and respectful of others’ relationships to the art making.

The process culminated in the collective creation of a tile mosaic wall mural, which is permanently installed in the host site.

Collaborative analysis

In PAR projects, data collection and analysis are not typically isolated to different phases of research. Instead, a tried and tested approach to collaborative analysis 53 is to use generated data as a basis for reflection on commonalities, patterns, differences, underlying causes or potentials on an ongoing basis. For instance, body mapping, photography, or video projects often proceed through a series of workshops, with small-scale training–data collection–data analysis cycles in each workshop. Participants gather or produce materials in response to a prompt, and then come together to critically discuss the meaning of their productions.

Simultaneously, or later, a more formal data analysis may be employed, using established social science analytical tools such as grounded theory, thematic, content or discourse analysis, or other forms of visual or ethnographic analysis, with options for facilitated co-researcher involvement. The selection of a specific orientation or approach to analysis is often a low priority for community-based co-researchers. It may be appropriate for university-based researchers to take the lead on comprehensive analysis and the derivation of initial messages. Fine and Torre 29 describe the university-based researchers producing a “best bad draft” so that there is something on the table to react to and discuss. Given the multiple iterations of participants’ expressions of experiences and analyses by this stage, the university-based researchers should be in a position that their best bad draft is grounded in a good understanding of local perspectives and should not appear outlandish, one-sided or an imposition of outside ideas.

For the results and recommendations to reflect community interests, it is important to incorporate a step whereby community representatives can critically examine and contribute to emerging findings and core messages for the public, stakeholders or academic audiences.

Planning and taking action

Taking action is an integral part of a PAR process. What counts as action and change is different for each PAR project. Actions could be targeted at a wide range of scales and different stakeholders, with differing intended outcomes. Valid intended outcomes include creating supportive networks to share resources through mutual aid; empowering participants through sharing experiences and making sense of them collectively; using the emotional impact of artistic works to influence policymakers and journalists; mobilizing collective action to build community power; forging a coalition with other activist and advocacy groups; and many others. Selection between the options depends on underlying priorities, values, theories of how social change happens and, crucially, feasibility.

Articulating a theory of change is one way to demonstrate how we intend to bring about changes through designing an action plan. A theory of change identifies an action and a mechanism, directed at producing outcomes, for a target group, in a context. This device has often been used in donor-driven health and development contexts in a rather prescriptive way, but PAR teams can adapt the tool as a scaffolding for being explicit about action plans and as a basis for further discussions and development of those plans. Many health and development organizations (such as Better Evaluation ) have frameworks to help design a theory of change.

Alternatively, a community action plan 5 can serve as a tangible roadmap to produce change, by setting out objectives, strategies, timeline, key actors, required resources and the monitoring and evaluation framework.

Social change is not easy, and existing social systems benefit, some at the expense of others, and are maintained by power relations. In planning for action, analysis of the power relations at stake, the beneficiaries of existing systems and their potential resistance to change is crucial. It is often wise to assess various options for actions, their potential benefits, risks and ways of mitigating those risks. Sometimes a group may collectively decide to settle for relatively secure, and less-risky, small wins but with the building of sufficient power, a group may take on a bigger challenge 54 .

Ethical considerations are fundamental to every aspect of PAR. They include standard research ethics considerations traditionally addressed by research ethics committees or institutional review boards (IRBs), including key principles of avoidance of harm, anonymity and confidentiality, and voluntary informed consent, although these issues may become much more complex than traditionally presented, when working within a PAR framework 55 . PAR studies typically benefit from IRBs that can engage with the relational specificities of a case, with a flexible and iterative approach to research design with communities, instead of being beholden to very strict and narrow procedures. Wilson and colleagues 56 provide a comprehensive review of ethical challenges in PAR.

Beyond procedural research ethics perspectives, relational ethics are important to PAR projects and raise crucial questions regarding the purpose and conduct of knowledge production and application 37 , 57 , 58 . Relational ethics encourage an emphasis on inclusive practices, dialogue, mutual respect and care, collective decision-making and collaborative action 57 . Questions posed by Indigenous scholars seeking to decolonize Western knowledge production practices are pertinent to a relational ethics approach 4 , 28 . These include: Who designs and manages the research process? Whose purposes does the research serve? Whose worldviews are reproduced? Who decides what counts as knowledge? Why is this knowledge produced? Who benefits from this knowledge? Who determines which aspects of the research will be written up, disseminated and used, and how? Addressing such questions requires scholars to attend to the ethical practices of cultivating trusting and reciprocal relationships with participants and ensuring that the organizations, communities and persons involved co-govern and benefit from the project.

Reflecting on the ethics of her PAR project with young undocumented students in the USA, Cahill 55 highlights some of the intensely complex ethical issues of representation that arose and that will face many related projects. Determining what should be shared with which audiences is intensely political and ethical. Cahill’s team considered editing out stories of dropping out to avoid feeding negative stereotypes. They confronted the dilemma of framing a critique of a discriminatory educational system, while simultaneously advocating that this flawed system should include undocumented students. They faced another common dilemma of how to stay true to their structural analysis of the sources of harms, while engaging decision-makers invested in the current status quo. These complex ethical–political issues arise in different forms in many PAR projects. No answer can be prescribed, but scholar–activists can prepare themselves by reading past case studies and being open to challenging debates with co-researchers.

The knowledge built by PAR is explicitly knowledge-for-action, informed by the relational ethical considerations of who and what the knowledge is for. PAR builds both  local knowledge and conceptual knowledge. As a first step, PAR can help us to reflect locally, collectively, on our circumstances, priorities, diverse identities, causes of problems and potential routes to tackle them.

Such local knowledge might be represented in the form of statistical findings from a community survey, analyses of participants’ verbal or visual data, or analyses of workshop discussions. Findings may include elements such as an articulation of the status quo of a community issue; a participatory analysis of root causes and/or actionable elements of the problem; a power analysis of stakeholders; asset mapping; assessment of local needs and priorities. Analysis goes beyond the surface problems, to identify underlying roots of problems to inform potential lines of action.

Simultaneously, PAR also advances more global conceptual knowledge. As liberation theorists have noted, developments in societal understandings of inequalities, marginalization and liberation are often led by those battling such processes daily. For example, the young Black and Indigenous participants working with Tuck and Habtom 25 in Toronto, Canada, engaged as co-theorists in their project about the significance of social movements to young people and their post-secondary school futures. Through their photography project, they expressed how place, and its history, particularly histories of settler colonialism, matters in cities — against a more standard view that treated the urban as somehow interchangeable, modern or neutral. The authors argue for altered conceptions of urban and urban education scholarly literatures, in response to this youth-led knowledge.

A key skill in the art of PAR is in creating achievable actions by choosing a project that is engaging and ambitious with achievable elements, even where structures are resistant to change. PAR projects can produce actions across a wide range of scales (from ‘small, local’ to ‘large, structural’) and across different temporal scales. Some PAR projects are part of decades-long programmes. Within those programmes, an individual PAR project, taking place over 12 or 24 months, might make one small step in the process towards long-term change.

For example, an educational project with young people living in communities vulnerable to flooding in Brazil developed a portfolio of actions, including a seminar, a native seeds fair, support to an individual family affected by a landslide, a campaign for a safe environment for a children’s pre-school, a tree nursery at school and influencing the city’s mayor to extend the environmental project to all schools in the area 30 .

Often the ideal scenario is that such actions lead to material changes in the power of a community. Over the course of a 5-year journey, the Katkari community (Box  1 ) worked with PAR researchers to build community power to resist eviction. The community team compiled households’ proof of residence; documented the history of land use and housing; engaged local government about their situations and plans; and participated more actively in village life to cultivate support 39 . The university-based researchers collected land deeds and taught sessions on land rights, local government and how to acquire formal papers. They opened conversations with the local government on legal, ethical and practical issues. Collectively, their legal knowledge and groundwork gave them confidence to remove fencing erected by landlords and to take legal action to regularize their land rights, ultimately leading to 70 applications being made for formal village sites. This comprised a tangible change in the power relation between landlords and the communities. Even here, however, the authors do not simply celebrate their achievements, but recognize that power struggles are ongoing, landlords would continue to aggressively pursue their interests, and, thus, their achievements were provisional and would require vigilance and continued action.

Most crucially, PAR projects aim to develop university-based and community-based researchers’ collective agency, by building their capacities for collaboration, analysis and action. More specifically, collaborators develop multiple transferable skills, which include skills in conducting research, operating technology, designing outputs, leadership, facilitation, budgeting, networking and public speaking 31 , 59 , 60 .

University-based researchers build their own key capacities through exercising and developing skills, including those for collaboration, facilitation, public engagement and impact. Strong PAR projects may build capacities within the university to sustain long-term relationships with community projects, such as modified and improved infrastructures that work well with PAR modalities, appreciation of the value of long-term sustained reciprocal relations and personal and organizational relationships with communities outside the university.

Applications

PAR disrupts the traditional theory–application binary, which usually assumes that abstract knowledge is developed through basic science, to then be interpreted and applied in professional or community contexts. PAR projects are always applied in the sense that they are situated in concrete human and social problems and aim to produce workable local actions. PAR is a very flexible approach. A version of a PAR project could be devised to tackle almost any real-world problem — where the researchers are committed to an emancipatory and participatory epistemology. If one can identify a group of people interested in collectively generating knowledge-for-action in their own context or about their own practices, and as long as the researchers are willing and able to share power, the methods set out in this Primer could be applied to devise a PAR project.

PAR is consonant with participatory movements across multiple disciplines and sectors, and thus finds many intellectual homes. Its application is supported by social movements for inclusion, equity, representation of multiple voices, empowerment and emancipation. For instance, PAR responds to the value “nothing about us without us”, which has become a central tenet of disability studies. In youth studies, PAR is used to enhance the power of young people’s voices. In development studies, PAR has a long foundation as part of the demand for greater participation, to support locally appropriate, equitable and locally owned changes. In health-care research, PAR is used by communities of health professionals to reflect and improve on their own practices. PAR is used by groups of health-care service users or survivors to give a greater collective power to the voices of those at the sharp end of health care, often delegitimized by medical power. In environmental sciences, PAR can support local communities to take action to protect their environments. In community psychology, PAR is valued for its ability to nurture supportive and inclusive processes. In summary, PAR can be applied in a huge variety of contexts in which local ownership of research is valued.

Limitations to PAR’s application often stem from the institutional context. In certain (often dominant) academic circles, local knowledge is not valued, and contextually situated, problem-focused, research may be considered niche, applied or not generalizable. Hence, research institutions may not be set up to be responsive to a community’s situation or needs or to support scholar–activists working at the research–action boundary. Further, those who benefit from, or are comfortable with, the status quo of a community may actively resist attempts at change from below and may undermine PAR projects. In other cases, where a community is very divided or dispersed, PAR may not be the right approach. There are plenty of examples of PAR projects floundering, failing to create an active group or to achieve change, or completely falling through. Even such failures, however, shed light on the conditions of communities and the power relations they inhabit and offer lessons on ways of working and not working with groups in those situations.

Reproducibility and data deposition

Certain aspects of the open science movement can be productively engaged from within a PAR framework, whereas others are incompatible. A key issue is that PAR researchers do not strive for reproducibility, and many would contest the applicability of this construct. Nonetheless, there may be resonances between the open science principle of making information publicly available for re-use and those PAR projects that aim to render visible and audible the experience of a historically under-represented or mis-represented community. PAR projects that seek to represent previously hidden realities of, for example, environmental degradation, discriminatory experiences at the hands of public services, the social history of a traditionally marginalized group, or their neglected achievements, may consider creating and making public robust databases of information, or social history archives, with explicit informed permission of the relevant communities. For such projects, making knowledge accessible is an essential part of the action. Publicly relevant information should not be sequestered behind paywalls. PAR practitioners should thus plan carefully for cataloguing, storing and archiving information, and maintaining archives.

On the other hand, however, a blanket assumption that all data should be made freely available is rarely appropriate in a PAR project and may come into conflict with ethical priorities. Protecting participants’ confidentiality can mean that data cannot be made public. Protecting a community from reputational harm, in the context of widespread dehumanization, criminalization or stigmatization of dispossessed groups, may require protection of their privacy, especially if their lives or coping strategies are already pathologized 25 . Empirical materials do not belong to university-based researchers as data and cannot be treated as an academic commodity to be opened to other researchers. Open science practices should not extend to the opening of marginalized communities to knowledge exploitation by university researchers.

The principle of reproducibility is not intuitively meaningful to PAR projects, given their situated nature, that is, the fact that PAR is inherently embedded in particular concrete contexts and relationships 61 . Beyond reproducibility, other forms of mutual learning and cross-case learning are vitally important. We see increasing research fatigue in communities used, extractively, for research that does not benefit them. PAR teams should assess what research has been done in a setting to avoid duplication and wasting people’s time and should clearly prioritize community benefit. At the same time, PAR projects also aspire to produce knowledge with wider implications, typically discussed under the term generalizability or transferability. They do so by articulating how the project speaks to social, political, theoretical and methodological debates taking place in wider knowledge communities, in a form of “communicative generalisation” 62 . Collaborating and sharing experiences across PAR sites through visits, exchanges and joint analysis can help to generalize experiences 30 , 61 .

Limitations and optimizations

PAR projects often challenge the social structures that reproduce established power relations. In this section, we outline common challenges to PAR projects, to prompt early reflection. When to apply a workaround, compromise, concede, refuse or regroup and change strategy are decisions that each PAR team should make collectively. We do not have answers to all the concerns raised but offer mitigations that have been found useful.

Institutional infrastructure

Universities’ interests in partnerships with communities, local relevance, being outward-facing, public engagement and achieving social impact can help to create a supportive environment for PAR research. Simultaneously, university bureaucracies and knowledge hierarchies that prize their scientists as individuals rather than collaborators and that prioritize the methods of dominant science can undermine PAR projects 63 . When Cowan, Kühlbrandt and Riazuddin 45 proposed using gaming, drama, fiction and film-making for a project engaging young people in thinking about scientific futures, a grants manager responded “But this project can’t just be about having fun activities for kids — where is the research in what you’re proposing?” Research infrastructures are often slow and reluctant to adapt to innovations in creative research approaches.

Research institutions’ funding time frames are also often out of sync with those of communities — being too extended in some ways and too short in others 45 , 64 . Securing funding takes months and years, especially if there are initial rejections or setbacks. Publishing findings takes further years. For community-based partners, a year is a long time to wait and to maintain people’s interest. On the other hand, grant funding for one-off projects over a year or two (or even five) is rarely sufficient to create anything sustainable, reasserting precarity and short-termism. Institutions can better support PAR through infrastructure such as bridging funds between grants, secure staff appointments and institutional recognition and resources for community partners.

University infrastructures can value the long-term partnership working of PAR scholars by recognizing partnership-building as a respected element of an academic career and recognizing collaborative research as much as individual academic celebrity. Where research infrastructures are unsupportive, building relationships within the university with like-minded professional and academic colleagues, to share work-arounds and advocate collectively, can be very helpful. Other colleagues might have developed mechanisms to pay co-researchers, or to pay in advance for refreshments, speed up disbursement of funds, or deal with an ethics committee, IRB, finance office or thesis examiner who misunderstands participatory research. PAR scholars can find support in university structures beyond the research infrastructure, such as those concerned with knowledge exchange and impact, campus–community partnerships, extension activities, public engagement or diversity and inclusion 64 . If PAR is institutionally marginalized, exploring and identifying these work-arounds is extremely labour intensive and depends on the cultivation of human, social and cultural capital over many years, which is not normally available to graduate students or precariously employed researchers. Thus, for PAR to be realized, institutional commitment is vital.

Co-option by powerful structures

When PAR takes place in collaboration or engagement with powerful institutions such as government departments, health services, religious organizations, charities or private companies, co-option is a significant risk. Such organizations experience social pressure to be inclusive, diverse, responsive to communities and participatory, so they may be tempted to engage communities in consultation, without redistributing power. For instance, when ‘photovoice’ projects invite politicians to exhibitions of photographs, their activity may be co-opted to serving the politician’s interest in being seen to express support, but result in no further action. There is a risk that using PAR in such a setting risks tokenizing marginalized voices 65 . In one of our current projects, co-researchers explore the framing of sexual violence interventions in Zambia, aiming to promote greater community agency and reduce the centrality of approaches dominated by the Global North 66 . One of the most challenging dilemmas is the need to involve current policymakers in discussions without alienating them. The advice to ‘be realistic’, ‘be reasonable’ or ‘play the game’ to keep existing power brokers at the table creates one of the most difficult tensions for PAR scholars 48 .

We also caution against scholars idealizing PAR as an ideal, egalitarian, inclusive or perfect process. The term ‘participation’ has become a policy buzzword, invoked in a vaguely positive way to strengthen an organization’s case that they have listened to people. It can equally be used by researchers to claim a moral high ground without disrupting power relations. Depriving words of their associated actions, Freire 7 warns us, leads to ‘empty blah’, because words gain their meaning in being harnessed to action. Labelling our work PAR does not make it emancipatory, without emancipatory action. Equally, Freire cautions against acting without the necessary critical reflection.

To avoid romanticization or co-option, PAR practitioners benefit from being held accountable to their shared principles and commitments by their critical networks and collaborators. Our commitments to community colleagues and to action should be as real for us as any institutional pressures on us. Creating an environment for that accountability is vital. Box  4 offers a project exemplar featuring key considerations regarding power concerns.

Box 4 Case study: participatory power and its vulnerability

Júba Wajiín is a pueblo in a rural mountainous region in the lands now called Guerrero, Mexico, long inhabited by the Me’phaa people, who have fiercely resisted precolonial, colonial and postcolonial displacement and dispossession. Using collective participatory action methods, this small pueblo launched and won a long legal battle that now challenges extractive mining practices.

Between 2001 and 2012, the Mexican government awarded massive mining concessions to mining companies. The people of Júba Wajiín discovered in mid-2013 that, unbeknown to them, concessions for mining exploration of their lands had been awarded to the British-based mining company Horschild Mexico. They engaged human rights activists who used participatory action research methods to create awareness and to launch a legal battle. Tlachinollan, a regional human rights organization, held legal counselling workshops and meetings with local authorities and community elders.

The courts initially rejected the case by denying that residents could be identified as Indigenous because they practised Catholicism and spoke Spanish. A media organization, La Sandia Digital , supported the community to collectively document their syncretic religious and spiritual practices, their ability to speak Mhe’paa language and their longstanding agrarian use of the territory. They produced a documentary film Juba Wajiin: Resistencia en la Montaña , providing visual legal evidence.

After winning in the District court, they took the case to the Supreme Court, asking it to review the legality and validity of the mining concessions. Horschild, along with other mining companies, stopped contesting the case, which led to the concessions being null and void.

The broader question of Indigenous peoples’ territorial rights continued in the courts until mid-2022 when the Supreme Court ruled that Indigenous peoples had the constitutional right to be consulted before any mining activities in their territory. This was a win, but a partial one. ‘Consultations’ are often manipulated by state and private sectors, particularly among groups experiencing dire impoverishment. Júba Wajiín’s strategies proved successful but the struggle against displacement and dispossession is continual.

Power inequalities within PAR

Power inequalities also affect PAR teams and communities. For all the emphasis on egalitarian relationships and dialogue, communities and PAR teams are typically composed of actors with unequal capacities and powers, introducing highly complex challenges for PAR teams.

Most frequently, university-based researchers engaging with marginalized communities do not themselves share many aspects of the identities or life experiences of those communities. They often occupy different, often more privileged, social networks, income brackets, racialized identities, skill sets and access to resources. Evidently, the premise of PAR is that people with different lives can productively collaborate, but gulfs in life experience and privilege can yield difficult tensions and challenges. Expressions of discomfort, dissatisfaction or anger in PAR projects are often indicative of power inequalities and an opportunity to interrogate and challenge hierarchies. Scholars must work hard to undo their assumptions about where expertise and insights may lie. A first step can be to develop an analysis of a scholar’s own participation in the perpetuation of inequalities. Projects can be designed to intentionally redistribute power, by redistributing skills, responsibilities and authority, or by redesigning core activities to be more widely accessible. For instance, Marzi 51 in a participatory video project, used role swapping to distribute the leadership roles of chairing meetings, choosing themes for focus and editing, among all the participants.

Within communities, there are also power asymmetries. The term ‘community participation’ itself risks homogenizing a community, such that one or a small number of representatives are taken to qualify as the community. Yet, communities are characterized by diversity as much as by commonality, with differences across sociological lines such as class, race, gender, age, occupation, housing tenure and health status. Having the time, resources and ability to participate is unlikely to be evenly distributed. Some people need to devote their limited time to survival and care of others. For some, the embodied realities of health conditions and disabilities make participation in research projects difficult or undesirable 67 . If there are benefits attached to participation, careful attention to the distribution of such benefits is needed, as well as critical awareness of the positionality of those involved and those excluded. Active efforts to maximize accessibility are important, including paying participants for their valued time; providing accommodations for people with health conditions, disabilities, caring responsibilities or other specific needs; and designing participatory activities that are intuitive to a community’s typical modes of communication.

Lack of control and unpredictability

For researchers accustomed to leading research by taking responsibility to drive a project to completion, using the most rigorous methods possible, to achieve stated objectives, the collaborative, iterative nature of PAR can raise personal challenges. Sense 68 likens the facilitative role of a PAR practitioner to “trying to drive the bus from the rear passenger seat—wanting to genuinely participate as a passenger but still wanting some degree of control over the destination”. PAR works best with collaborative approaches to leadership and identities among co-researchers as active team members, facilitators and participants in a research setting, prepared to be flexible and responsive to provocations from the situation and from co-researchers and to adjust project plans accordingly 28 , 68 , 69 . The complexities involved in balancing control issues foreground the importance of reflexive practice for all team members to learn together through dialogue 70 . Training and socialization into collaborative approaches to leadership and partnership are crucial supports. Well-functioning collaborative ways of working are also vital, as their trusted structure can allow co-researchers to ‘trust the process’, and accept uncertainties, differing perspectives, changes of emphasis and disruptions of assumptions. We often want surprises in PAR projects, as they show that we are learning something new, and so we need to be prepared to accept disruption.

The PAR outlook is caught up in the ongoing history of the push and pull of popular movements for the recognition of local knowledge and elite movements to centralize authority and power in frameworks such as universal science, professional ownership of expertise, government authority or evidence-based policy. As a named methodological paradigm, PAR gained legitimacy and recognition during the 1980s, with origins in popular education for development, led by scholars from the Global South 16 , 32 , and taken up in the more Global-North-dominated field of international development, where the failings of externally imposed, contextually insensitive development solutions had become undeniable 21 . Over the decades, PAR has both participated in radical social movements and risked co-option and depoliticization as it became championed by powerful institutions, and it is in this light that we consider PAR’s relation to three contemporary societal movements.

Decolonizing or re-powering

The development of PAR took place in tandem with anti-colonial movements and discourses during the 1970s and 1980s, in which the colonization of land, people and knowledge were all at stake. During the mid-2010s, calls for decolonization of the university were forced onto the agenda of the powerful by various groups, including African students and youth leading the ‘Rhodes Must Fall’, ‘Fees must Fall’ and ‘Gandhi must Fall’ movements 71 , followed by the eruption of Black Lives Matter protests in 2020 (ref. 72 ). PAR is a methodology that stands to contribute to decolonization-colonization through the development of alternatives to centralizing knowledge and power. As such, the vitality of local and global movements demanding recognition of grassroots knowledge and the dismantling of oppressive historical power–knowledge systems heralds many openings and exciting potential collaborations and causes for PAR practitioners 73 , 74 . As these demands make themselves felt in powerful institutions, they create openings for PAR.

Yet, just as PAR has been subject to co-option and depoliticization, the concept of decolonization too is at risk of appropriation by dominant groups and further tokenization of Indigenous groups, as universities, government departments and global health institutions absorb the concept, fitting it into their existing power structures 41 , 75 . In this context, Indigenous theorists in Aotearoa/New Zealand are working on an alternative concept of ‘re-powering Indigenous knowledge’ instead of ‘decolonizing knowledge’. By doing so, they centre Indigenous people and their knowledge, instead of the knowledge or actions of colonizers, and foreground the necessity of changes to power relations. African and African American scholars working on African heritage and political agency have drawn on the Akan philosophy of Sankofa for a similar purpose 76 . Sankofa derives from a Twi proverb Se wo were fi na wosan kofa a yenkyiri (It is not taboo to fetch what is at risk of being left behind). Going back to fetch what is lost is a self-grounded act that draws on the riches of Indigenous history to re-imagine and restructure the future 77 . It is also an act independent of the colonial and colonizing gaze. Contributing to a mid-twenty-first century re-powering community knowledge is a promising vision for PAR. More broadly, the loud voices and visionary leadership of contemporary anti-racist, anti-colonial, Indigenous, intersectional feminist and other emancipatory movements provide a vibrant context to re-invent and renew PAR.

Co-production

In fields concerned with health and public service provision, a renewed discourse of respectful engagement with communities and service users has centred in recent years on the concept of  co-production 78 . In past iterations, concepts such as citizen engagement, patient participation, community participation and community mobilization had a similar role. Participatory methods have proved their relevance within such contexts, for example, providing actionable and wise insights to clinicians seeking to learn from patients, or to providers of social services seeking to target their services better. Thus, the introduction of co-production may create a receptive environment for PAR in public services. Yet again, if users are participating in something, critical PAR scholars should question in which structures they are participating, instantiating which power relations and to whose benefit. PAR scholars can find themselves compromised by institutional requirements. Identifying potential compromises, lines that cannot be crossed and areas where compromises can be made; negotiating with institutional orders; and navigating discomfort and even conflict are key skills for practitioners of PAR within institutional settings.

One approach to engaging with institutional structures has been to gather evidence for the value of PAR, according to the measures and methods of dominant science. Anyon and colleagues 59 systematically reviewed the Youth PAR literature in the United States. They found emerging evidence that PAR produces positive outcomes for youth and argued for further research using experimental designs to provide harder evidence. They make the pragmatic argument that funding bodies require certain forms of evidence to justify funding, and so PAR would benefit by playing by those rules.

A different approach, grounded in politics rather than the academy, situates co-production as sustained by democratic struggles. In the context of sustainability research in the Amazon, for instance, Perz and colleagues 79 argue that the days of externally driven research are past. Mobilization by community associations, Indigenous federations, producer cooperatives and labour unions to demand influence over the governance of natural resources goes hand in hand with expectations of local leadership and ownership of research, often implemented through PAR. These approaches critically question the desirability of institutional, external funding or even non-monetary support for a particular PAR project.

Global–local inequality and solidarity

Insufferable global and local inequalities continue to grow, intensified by climate catastrophes, the coronavirus disease 2019 (COVID-19) pandemic and extreme concentrations of wealth and political influence, and contested by increasingly impactful analyses, protests and refusals by those disadvantaged and discriminated against. Considering the impact of the COVID-19 pandemic on PAR projects, Auerbach and colleagues 64 identify increasing marketization and austerity in some universities, and the material context of growing pressure on marginalized communities to simply meet their needs for survival, leaving little capacity for participating in and building long-term partnerships. They describe university-based researchers relying on their own capacities to invent new modes of digital collaboration and nourish their partnerships with communities, often despite limited institutional support.

We suggest that building solidaristic networks, and thus building collective power, within and beyond universities offers the most promising grounding for a fruitful outlook for PAR. PAR scholars can find solidarity across a range of disciplines, traditions, social movements, topics and geographical locations. Doing so offers to bridge traditions, share strategies and resonances, build methodologies and politics, and crucially, build power. In global health research, Abimbola and colleagues 80 call for the building of Southern networks to break away from the dominance of North–South partnerships. They conceptualize the South not only as a geographical location, as there are of course knowledge elites in the South, but as the communities traditionally marginalized from centres of authority and power. We suggest that PAR can best maximize its societal contribution and its own development and renewal by harnessing the diverse wisdom of knowledge generation and participatory methods across Southern regions and communities, using that wisdom to participate in global solidarities and demands for redistribution of knowledge, wealth and power.

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Acknowledgements

The authors thank their PAR collaborators and teachers, who have shown us how to take care of each other, our communities and environments. They thank each other for generating such a productive critical thinking space and extending care during challenging times.

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Flora Cornish & Nancy Breton

Departmento de Gestion para el Desarrollo Sustentable, CONACyT–Universidad Autonoma de Guerrero, Acapulco, Guerrero, Mexico

Ulises Moreno-Tabarez

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Jenna Delgado

Māori Studies, University of Auckland, Auckland, Aotearoa, New Zealand

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Ama de-Graft Aikins

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Involving multiple team members in the analysis and interpretation of materials generated, typically in iterative cycles of individual or pair work and group discussion.

Both a structure and a process, community refers to a network of often diverse and unequal persons engaged in common tasks or actions, stakes or interests that lead them to form social ties or commune with one another.

A process through which a person or group’s activities are altered or appropriated to serve another group’s interests.

A term typically used in service provision to describe partnership working between service providers and service users, to jointly produce decisions or designs.

A call to recognize and dismantle the destructive legacies of colonialism in societal institutions, to re-power indigenous groups and to construct alternative relationships between peoples and knowledges that liberate knowers and doers from colonial extraction and centralization of power.

Scholarship that creates knowledge of the conditions that limit or oppress us to liberate ourselves from those conditions and to support others in their own transformations.

Injustices in relation to knowledge, including whose knowledge counts and which knowledge is deemed valid or not.

Research that extracts information and exploits relationships, places and peoples, producing benefit for scholars or institutions elsewhere, and depleting resources at the sites of the research.

Knowledge that is rooted in experience in a particular social context, often devalued by social science perspectives that make claims to generalizability or universality.

The relationships of domination, subordination and resistance between individuals or social groups, allowing some to advance their perspectives and interests more than others.

A methodological practice through which scholars critically reflect on their own positionality and how it impacts on participants and co-researchers, understanding of the topic and the knowledge produced.

An approach to ethical conduct that situates ethics as ongoingly negotiated within the context of respectful relationships, beyond following the procedural rules often set out by ethics committees.

A dual role in which scholars use their knowledge (scholarship) to tackle injustices and instigate changes (activism) in collaboration with marginalized communities and/or organizations.

Doing something or appointing a person for reasons other than in the interest of enabling meaningful change.

A systemic change in which relationships and structures are fundamentally altered, often contrasted with smaller-scale changes such as varying or refining existing relations.

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Participatory action research (PAR)

is a framework for conducting research and generating knowledge centered on the belief that those who are most impacted by research should be the ones taking the lead in framing the questions, the design, methods, and the modes of analysis of such research projects. The framework is rooted in the belief that there is value in both traditionally recognized knowledge, such as scholarship generated by university-based researchers, and historically delegitimized knowledge, such as knowledge generated within marginalized communities.

Participatory action research differs from social justice–oriented research conducted by university-based researchers because PAR involves affected community members in all aspects of the research. Andrea Dyrness explains that while “activist research often tries to shift the balance of power by changing how research is used,” such research does not necessarily change the research process (Dyrness, 2011, p. 203). In contrast, she argues that participatory action research assumes that “‘ordinary’ people also produce knowledge that is useful in struggles for change, and [that] the research process itself could be an important arena for making change” (p. 203). PAR aims to make the research process more democratic and collaborative.

The PAR framework provides one way for critical reflection on problems of social inequity, attempting to move beyond the divisions that often exist between universities and their surrounding communities. Michelle Fine (2018), a researcher foundational in developing the PAR framework in the field of education, explains, “Like the arts, independent media, and social movements, in moments of crisis, critical participatory action research can carve out delicate spaces for fragile solidarities and collective inquiries, and even more valid research, where we might join with others to collectively ignite the slow fuse of possible” (p. 123).

PAR assumes that people in a particular context want to study themselves and their practices with the aim of changing their practices to make their context better. Rather than imposing research projects or solutions onto a community, PAR projects provide targeted community groups with the tools and skills to study their context in order “to transform ‘the way we do things around here’” (McTaggart et al., 2017, p. 28). PAR projects are contextually specific; they are focused on “what happens here, in this single case—not what goes on anywhere or everywhere” (p. 28). PAR projects can involve a range of research methodologies, and findings can be disseminated in various ways, including through art and performance.

As PAR scholars have noted, these projects take time, and the process is often messy and unpredictable. There will be inevitable conflicts of interests, ideas, and identities. The principles of participatory action research encourage everyone involved in the research to “excavate and explore disagreements and disjunctures rather than smooth them over in the interests of consensus” (Torre, 2009).

Watch this video to learn from various experts about what PAR is and why it matters

Dyrness, A. (2011).  Mothers united: an immigrant struggle for socially just education . University of Minnesota Press.

Fine, M. (2018).  Just research in contentious times: widening the methodological imagination . Teachers College Press.

McTaggart, R., Nixon, R., & Kemmis, S. (2017). Critical Participatory Action Research. In L. L. Rowell (Ed.),  The Palgrave International Handbook of Action Resea rch (pp. 21-35). Springer. https://doi.org/10.1057/978-1-137-40523-4_2

Torre, M. E. (2009). PAR-Map. The Public Science Project. https://drive.google.com/file/d/1mcX3OR0nfif6pRx1eMXRfnqv2xoRV3PJ/view

History of PAR

The origins of PAR cannot be traced back to any one lineage; instead, participatory action research is a convergence of multiple traditions, ranging from academic fields of social work, public health, and education to popular social justice movements. PAR also developed distinctly all across the world. As Fine and Torre note, in each of these varied places,

“PAR developed out of the rich soil of critical, community knowledges held by ‘insiders’ to community life. As those insiders sat at the bottom of social arrangements, they witnessed the holes in the ideological stories told, the practices engaged, and the contradictions that sustain stratification” (2004, p. 18).

There are two particularly prominent lineages: that of psychologist Kurt Lewin and his work to develop what he termed “action research” and that of Latin American popular social reform movements informed by the thinking of Paulo Freire and other activists. Contemporarily, a movement of critical PAR seeks to (re)orient the framework toward decolonizing theories.

Fine, M., & Torre, M. E. (2004). Re-membering exclusions: Participatory action research in public institutions.  Qualitative Research in Psychology, 1 (1), 15–37. https://doi.org/10.1191/1478088704qp003oa

Zeller-Berkman, S. M. (2014). Lineages: A past, present, and future of participatory action research. In P. Leavy (Ed.), The Oxford Handbook of Qualitative Research (pp. 518–532). Oxford University Press.

Kurt Lewin came to the United States as a Jewish refugee from Nazi Germany during the 1930s. Influenced by Marxism, Lewin wanted to study anti-Semitism and the subjugation of Jewish communities while also taking action against it; he began to study group dynamics and the psychology of minority communities. As he delved deeper into this work, Lewin became increasingly committed to using research to effect social change. As a member of the Commission on Community Interrelations (CCI) formed in 1945 by the American Jewish Congress, Lewin pushed for research on minority communities to be done outside of the academy, within the studied communities themselves (Cherry & Borshuk, 1998). Counter to psychological approaches of the time, Lewin’s philosophy “implicated all members of society as responsible for changing the conditions that create so-called minority problems” (Zeller-Berkman, 2014). Specifically, he wrote, “In recent years we have started to realize that so-called minority problems are in fact majority problems, that the Negro problem is the problem of the white, that the Jewish problem is the problem of the non-Jew, and so on” (Lewin, 1946, p. 44).

Lewin introduced the term action research to describe the study of a social problem with the intent to change it. He envisioned action research, and participatory action research, as a continuous self-reflective cycle of inquiry, action, and evaluation, undertaken collectively with or by society’s marginalized peoples (Torre, 2014; Cherry & Borshuk, 1998; Zeller-Berkman, 2014). Lewin wrote, “Fact-finding has to include all the aspects of community life—economic factors as well as political factors or cultural tradition. It has to include the majority and the minority, non-Jews and ourselves” (Cherry & Borshuk, 1998, p. 126).

Cherry, F., & Borshuk, C. (1998). Social action research and the Commission on Community Interrelations.  The Journal of Social Issues,   54 (1), 119–142.  https://doi.org/10.1111/j.1540-4560.1998.tb01210.x

Greenwood, D. J., & Levin, M. (1998).  Introduction to action research: Social research for social change.  Sage Publications, Inc.

Lewin, K. (1946). Action research and minority problems.  The Journal of Social Issues,   2 (4), 34–46.  https://doi.org/10.1111/j.1540-4560.1946.tb02295.x

Torre, M. E. (2014). Participatory action research. In T. Teo (Ed.), Encyclopedia of Critical Psychology . Springer.  https://doi.org/10.1007/978-1-4614-5583-7_211

Latin American Legacy

The Latin American revolutionary lineage of PAR includes thinkers such as Paulo Freire, a Brazilian advocate for critical pedagogy and popular education, and Orlando Fals Borda, a Colombian sociologist.

According to Zeller-Berkman (2014), a legacy of corrupt and exploitative international development efforts of the 1960s and 1970s led social scientists in Latin America to develop self-sufficiency within research processes, taking control of and decolonizing the means of knowledge production. In this lineage of PAR, the role of the academic researcher was to be the “animator,” or the person who facilitated the transformation of common community knowledge to critical knowledge. The eventual goal was to have the community researchers gain enough research skills so they could use these practices independently of academia to engage in inquiry into their own communities, produce their own knowledge, and develop their own solutions. Central to the PAR process, then, was capacity building and community organizing; Fals Borda called this combination of community organizing, popular education, and social science research a “people’s science” (Fals Borda, 1977).

Paulo Freire’s thinking around critical pedagogy and popular movements was central to the development of this decolonizing research process (Torre, 2014). Freire advocated for a democratic education and research system, in which people and communities were involved in the production of knowledge about themselves, and a social system in which this community knowledge was valued as an equal to university-based knowledge. A major theme in Freire’s process and work was the raising of critical consciousness—or conscientização —of one’s social and political situation through a cycle of inquiry, reflection, and action (Torre, 2014; Zeller-Berkman, 2014).

Fals Borda, O. (1977). Por la praxis: El problema de cómo investigar la realidad para transformarla. In O. Fals Borda (Ed.), Crítica y Política en Ciencias Sociales . Punta de Lanza.

Rahman, M. (1991). The theoretical standpoint of PAR. In  O. Fals Borda & M. Rahman,  Action and knowledge: Breaking the monopoly with participatory action research (pp. 13–24). Apex Press.  https://doi.org/10.3362/9781780444239.002

Contemporary Critical PAR

More recently, critical race and feminist scholars are re-centering PAR’s liberatory and decolonizing history. Wary of the potential co-optation of PAR by stakeholders with power (Fine, 2009; Torre, 2014), these researchers emphasize the framework’s connection to queer, feminist, Marxist, and Indigenous theories (Torre, 2014; Torre et al., 2012).

Some scholars have linked PAR with Gloria Anzaldúa’s Borderlands theories (Anzaldúa, 1987), advocating for a PAR that “embraces mestizaje ” and welcomes conflict—or choques —rather than only organizing around consensus (Torre & Ayala, 2009, p. 390). These scholars note that even within research collectives that do participatory research under common goals, “individual co-researchers carry particular interests, agendas, are differently situated with regard to resources and privilege;” these borders and nuances can be valuable spaces of knowledge creation, because they reflect conflicts that go beyond the research collective (Torre & Ayala, 2009, p. 388).

Moreover, PAR scholars center the experiences and theories of women of color as critical spaces of knowledge, pointing out that “mestiza consciousness houses multiplicity, hybridity, conflict and collaboration, within the bodies of women of color… From this consciousness, knowledge is presumed as existing within the flesh, with theory-making as part of the collective existence for women of color” (Ayala, 2009, p. 72).

(Linda Tuhiwai Smith, a Maori scholar, in her book  Decolonizing Methodologies: Research and Indigenous Peoples,  p. 10)

Anzaldúa, G. E. (1987). Borderlands/La Frontera: The New Mestiza . Aunt Lute Books.

Ayala, J. (2009). Split scenes, converging visions: The ethical terrains where PAR and Borderlands scholarship meet.  The Urban Review,   41 , 66–84.  https://doi.org/10.1007/s11256-008-0095-9

Fine, M. (2009). Postcards from Metro America: Reflections on youth participatory action research for urban justice.  The Urban Review,   41 , 1–6.  https://doi.org/10.1007/s11256-008-0099-5

Torre, M. E., & Ayala, J. (2009). Envisioning participatory action research entremundos.  Feminism & Psychology,   19 (3), 387–393.  https://doi.org/10.1177/0959353509105630

Torre, M. E., Fine, M., Stoudt, B., & Fox, M. (2012). Critical participatory action research as public science. In P. Camic & H. Cooper (Eds.), The handbook of qualitative research in psychology: Expanding perspectives in methodology and design (2nd ed., pp. 171–184). American Psychological Association.  https://doi.org/10.1037/13620-011

Common Types of PAR

While most PAR projects tend to share common themes, such as being led by community members most affected by the research, equity and inclusion throughout the research process, honoring diverse forms of knowledge, and the intent to act on findings through social change, there are a few different kinds of projects.

It is helpful to delineate the differences among these various types of PAR, but actual projects often contain elements of various types. For example, a university-based scholar might collaborate with a high school teacher to understand and improve the teacher’s practice, or adults in a community-based organization might collaborate with youth in their community on a PAR project.

The rest of the site is framed around these four types of PAR, allowing you to quickly find resources and examples relevant to your particular area of focus:

Youth Participatory Action Research (YPAR)

YPAR is an approach to community development in which youth take the lead, partnering with adults to create change or find a solution to a problem.

Teacher Action Research (TAR)

TAR is a method for educators to understand, evaluate, and improve their own practice. 

Community-Based PAR (CBPAR)

CBPAR is an approach in which a project is co-led in all phases by community members and academic researchers with the intent that findings will be used to change inequitable practices and systems.

University-Community PAR Collaborations

UCPAR collaborations tend to be started by university-based scholars reaching out to community members to conduct collaborative research around community issues that are aligned with the scholars’ area of research and discipline.

Ethics of PAR

A consideration of ethics is important in all research projects, including participatory action research projects., there are different ways to think about ethics:.

• There are often rules and regulations researchers need to follow that consider the well-being of people who are participating in research studies. Institutional review boards, often affiliated with universities, are committees that oversee the ethics of research studies.

Watch this video to learn about how IRBs protect human research participants

There are also community-based review boards such as the Bronx Community Research Review Board (BxCRRB):

The Bronx Community Research Review Board (BxCRRB)

The  BxCRRB advocates ensuring that every community member has a voice and is heard. It was founded to add community-focused oversight to the research review process in order to protect the disadvantaged and vulnerable populations in the Bronx from academic research abuse, such as lying about the potential dangers of studies or violating their human rights. The review process also works with researchers and advises them on how to approach the community in a way that is culturally sensitive.

• Ethics guide decision-making about research questions, methods, and so forth.
• There are also the everyday and on-the-ground ethics which guide how we work with others in the research process.
• Then in regards to regulations, there must be “respect for persons, beneficence, and justice.” This is from The Belmont Report :

• Because PAR projects often involve communities who have been historically marginalized and oppressed, the history of unethical medical research practices in the United States, particularly targeting communities of color, are an important part of how we need to understand ethics.

Two examples of such unethical practices are what happened during the Tuskegee Experiment:

(Learn more about the Tuskegee experiment: Reverby, S. M. (Ed.). (2012). Tuskegee’s truths: rethinking the Tuskegee syphilis study . UNC Press Books.)

…and what happened with Henrietta Lacks:

(Learn more about Henrietta Lacks: Skloot, R. (2017). The immortal life of Henrietta Lacks . Broadway Paperbacks.)

• PAR researchers might want to consider the following questions on an ongoing basis: How are you ensuring that you’re following the ethical principles that are central to any research, but especially to community-based participatory research (e.g., mutual respect, equality and inclusion, democratic participation, collective action, and so forth)?
• To learn more about what ethics look like in practice beyond consent forms in community-based participatory research, check out this team’s work with LGBT youth in the United Kingdom.

The various community research groups in the Carleton-Faribault project explored both research and everyday ethics in their groups:

For further exploration:

• “A Guide to Ethical Principles and Practice .” Developed by the Durham University’s Centre for Social Justice and Community Action, and published by the National Coordinating Centre for Public Engagement.
• A presentation on “ Tackling Ethical Challenges in Community-Based Participatory Research” by Sarah Banks from Durham University.
• This PAR checklist created by Katie Johnston-Goodstar and Jenna Sethi is helpful in thinking through many of the ethical dimensions of PAR projects.

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1 What Is Participatory Action Research? Contemporary Methodological Considerations

• Published: May 2022
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Chapter 1 outlines the key characteristics of Participatory Action Research (PAR), a methodology or approach that privileges active involvement of people with lived experiences, or co-researchers, to generate findings and strategies to effect change. The author explains how participatory research models can lead to social justice outcomes and the significance of co-research and co-production of new knowledge. The chapter focuses on eight underpinning principles of PAR: It involves disruption of traditional research approaches; reciprocal benefits; trust; deep engagement; social change; intersectionality; co-researchers’ agendas; and a challenge to power differentials. The author outlines how academic researchers’ commitment to reciprocity, or shared understanding of mutually beneficial outcomes, is at the core of PAR. She explains the concept of vulnerability as an ethical research practice, where academic researchers are open to the impact others have on their sense of self. The final part of the chapter outlines the book structure and provides background information on the five vignette contributors.

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Article contents

Participatory action research in education.

• Anne Galletta Anne Galletta Cleveland State University
•  and  María Elena Torre María Elena Torre Graduate Center, City University of New York
• https://doi.org/10.1093/acrefore/9780190264093.013.557
• Published online: 28 August 2019

Participatory action research (PAR) is an epistemological framework rooted in critiques of knowledge production made by feminist and critical race theory that challenge exclusive academic notions of what counts as knowledge. PAR legitimizes and prioritizes the expertise and perspectives that come from lived experience and situated knowledge, particularly among those that have been historically marginalized. In education research, a PAR approach typically centers the wisdom and experience of students (or school-age youth) and educators, positioning them as architects of research rather than objects of study. This form of participatory inquiry and collective action serves as a countercurrent in schools, where democratic inquiry and meaning making contradicts the top-down knowledge transmission practices bounded by prescribed curriculum and high-stakes standardized assessments. Like all scholars, those engaged in PAR contend with questions regarding standards of scientific practice and what counts as evidence even as they co-generate knowledge and solidarity with communities in which they may be members or allies that are outside the academy.

PAR projects frequently emerge from a critique of dehumanizing structural arrangements and alienating, often pathologizing, cultural discourses. These critiques spark a desire for research that questions these arrangements and discourses, documenting and engaging critical interpretive perspectives, all with the hope of producing findings that will create cracks and fissures in the status quo and provoke transformational change. PAR builds inquiry in the spaces between what is and what could be, with the assumption that dissonance and/or clashes of meaning with ruptures are generative in the possibility for reframing social problems and reconfiguring human relations. When discordance within the research collective, or between the collective and the outside world, is engaged rather than denied or smoothed over, new and different ways of seeing and being emerge. More than simply a method, critical PAR reflects a philosophical understanding of knowledge as socially produced through history and power, an epistemology that recognizes the liberatory impulse of critique and its potential for transformation. PAR projects privilege standpoints that have been traditionally excluded and excavate operations of power within the research in order to inform analytical lenses necessary to understanding dynamics within the issues and experiences being studied.

Examining the potential of PAR in education requires particular attention to the context of what children and youth encounter on a daily basis. Schools have been and continue to be spaces of struggle and contestation for students, in terms of learning and development, mental health and well-being, and physical safety. Federal policies have hollowed out protections for the most marginalized students, particularly youth of color; lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth; and immigrant and undocumented youth. The rampant privatization of public education, narrowing of public governance, and the deceptive branding of corporate reform as “equity” is sobering. PAR in education troubles this very context, offering a research praxis of countervailing power, agitation, and generative ways of knowing, and being in relation. This encyclopedic entry details the ways in which participatory spaces bring people together, through inquiry, across a continuum of privilege and vulnerability to make meaning of the conditions under which we are living, with each other, for our collective liberation.

• participatory action research
• education reform
• participatory contact zones
• generative dissonance

Introduction

Participatory action research (PAR) is an epistemological framework that reconfigures ways of knowing and being in relation—it marks an ontological shift from conventional research practices within the academy. Rooted in critiques of knowledge production made by feminist and critical race theory, PAR challenges exclusive academic notions of expertise, legitimizing, and prioritizing the expertise and perspectives that come from lived experience and situated knowledge, particularly those that have been historically marginalized (Collins, 1998 ; Harding, 1991 ). In education research, a PAR approach typically centers the wisdom and experience of students (or school-age youth) and educators, positioning them as architects of research rather than objects of study (Torre & Fine, 2006 ). Youth and educators are invited as colleagues to design research programs, determine research questions, gather and make sense of relevant literatures/existing knowledge, decide useful methods, collect and analyze data, and create meaningful research products. PAR may draw from a qualitative research approach or it may include quantitative research within a mixed methods approach.

While PAR does not need the participation of the academy, it is often constructed as a collaboration between university-based researchers and youth and sometimes adults outside of the university who are concerned about injustice in a number of public spheres. Together, these research collectives of differently positioned members across institutional and social hierarchies of power—of youth, academics, and, sometimes, elders, educators, artists, lawyers, and policymakers, for example—create what María (Torre, 2009 ) has called “participatory contact zones.” Each member/co-researcher brings her/his/their own reservoir of experiential knowledge and differing angles of vision to the table, into a participatory inquiry space committed to using and infusing these differences throughout the research process. A deeply relational praxis, PAR understands the diverse range of standpoints, and the potential dissonance and/or clashes that come with them, as an important and generative contribution to the research. When discordance within the research collective, or between the collective and the outside world, is engaged rather than denied or smoothed over, new and different ways of seeing and being emerge. For these reasons, PAR engages power and difference as part of an ethical and methodological stance within research. 1

To lay the groundwork for a discussion of the complexities of carrying out PAR projects in and around educational spaces, we begin by establishing some of the contemporary tensions within public education. We then introduce a project with the hope of illustrating some core theoretical, methodological, and ethical commitments of a critical PAR praxis, paying particular attention to the relational and structural dimensions of PAR as well as generative possibilities opened by PAR’s embrace of discontinuities and dissonance. At the heart of what we hope readers will take away from this article is an understanding of participation in PAR as an inherently ethical commitment to redistribute power and legitimacy. This commitment is complexly woven throughout all steps of the research process. In education, like many institutions, decentering privilege and questioning power threatens existing structural arrangements and is often met with hostility by those historically in control. While these challenges tear at the institutional fabric of what has been , the conflicts generated by participation have the potential to create openings and “break with what is supposedly fixed and finished, objectively and independently real” (Greene, 1995 , p. 19) and thus reframe research questions, introduce alternative interpretations, and reposition relations of power toward what could be .

In the next section, we outline the theoretical genealogy of PAR and consider philosophical underpinnings of critical participatory methodologies.

Theoretical Genealogy of PAR

The origins of critical PAR developed in the disciplinary margins of social psychology, education, and sociology. Many of its roots can be traced to community settings and contexts where academics, organizers, and residents gathered to address community problems and political oppression (Fals-Borda, 1977 ; Lewin, 1948 ; Rahman, 1985 ; Wormser & Selltiz, 1951 ). Social psychologist Kurt Lewin, Claire Selltiz, and Margot Wormser stretched the methodologies of their discipline in the 1940s and early 1950s, adapting and developing a practice of action research for problem-solving on issues of racial and ethnic discrimination in the aftermath of World War II (Cherry & Borshuk, 1998 ; Torre & Fine, 2011 ). Lewin ( 1948 ) argued for an action research methodology maintaining a “constant intense tension,” where one “keep[s] both theory and reality fully within his field of vision” (p. 10). Fals-Borda and Rhaman ( 1991 ) describe the use of PAR in Bangladesh, Columbia, India, Nicaragua, Peru, Sri Lanka, the United States, and Zimbabwe where a number of academics in the late 1970s and early 1980s left positions within the university to engage in participatory community research. Some later returned to the academy, committed to the bumpy task of inserting PAR methodologies within rigid disciplinary views of science. This involved altering conventional conceptions of science, challenging the academy’s exclusive hold on “expertise,” and expanding notions of who can legitimately produce knowledge to those outside universities. This shift in power toward collective community efforts investigating human problems signified a recognition of the deep reservoirs of cultural knowledge and local expertise within communities confronting these problems. Further, the emphasis on the urgency of community inquiry in turn deemed action to be an integral part of knowledge production. The commitment to action insisted on a praxis research aimed at disrupting relations of oppression. Embracing Marx’s call to move from interpretation to transformation (Engels, 1886/1946 ), an epistemology emerged around the globe that braided knowledge production, struggles for justice, and participation of the people.

More Than a “Method”

Central to a critical praxis of PAR is a framework that reconfigures relational, structural, and cultural arrangements of power in order to collectively alter ways of thinking about conditions of lived experience. Embodying the spirit of Gramsci (Hoare & Smith, 1971/2000 ), it involves a research process in which social givens are upended, “common sense” is critiqued (p. 637), and the “spontaneous’ consent” by which we participate in everyday structures of oppression is surfaced and troubled (p. 145). More than simply a method, critical PAR reflects a philosophical understanding of knowledge as socially produced through history and power, an epistemology that recognizes the liberatory impulse of critique and its potential for transformation. Projects privilege standpoints that have been traditionally excluded and excavates operations of power within the research in order to inform analytical lenses necessary to understanding dynamics within the issues and experiences being studied. As Morrow and Torres ( 1995 ) note, the experience of privilege and exclusion, sometimes veiled, “is never fully secured, remains precarious, and must be continually negotiated” (p. 278), providing potential for counterhegemony and resistance. In this sense, a PAR approach is both a “rigorous search for knowledge” and what Fals-Borda called a “ vivencia ,” a “progressive evolution toward an overall, structural transformation of society and culture, a process that requires ever renewed commitment, an ethical stand, self-critique and persistence at all levels” (Rahman & Fals-Borda, 1991 , p. 29).

Critical collective participatory methodologies create ways to explore inconsistencies between the external reality of those marginalized by poverty and the consciousness through which the reality is understood. Paulo Freire’s work in Brazil in the 1950s before his incarceration powerfully illustrates the link between the struggle for emancipatory knowledge and the constraints of social reproductive forces in education. He argued for a pedagogical praxis that was “forged with , not for , the oppressed (whether individuals or peoples) in the incessant struggle to regain their humanity” (Freire, 1970/2016 , p. 48). For Freire, key to the struggle for liberation was a movement toward awareness. Within PAR, researchers committed to justice “must perceive the reality of oppression not as a closed world from which there is no exit, but as a limiting situation which they can transform” (p. 49). Freire critiqued education as typically reliant on cultural transmission of knowledge that is widely privileged and credentialized, which he referred to as the “banking theory and practice” which “fail[s] to acknowledge men and women as historical beings” (p. 84).

The work of Lewin, Wormser and Selltiz, Fals-Borda, Rahman, Freire, and others around the globe has continued to inform generations of PAR driven by emancipatory struggle (Zeller-Berkman, 2014 ). Challenging the idea that expertise exists solely within the academy or professions, community leaders of color in the urban United States, alongside interracial solidarity collectives and indigenous peoples from rural and urban communities, have brought their local knowledge and practices to the research table, along with a multiplicity of skills and understandings to new knowledge and alternatives to oppressive structural arrangements (Ayala et al., 2018 ; Cahill et al., 2017 ; Galletta, 2019 ; Smith, 2012 ; Torre et al., 2017 ).

We turn now to a discussion of PAR specifically within the realm of education with the hope of marking important ideas, tensions, and ethical considerations. Our discussion should not be understood as exhaustive since the body of participatory research in education is rich with variation. We should note that the context from which we write is primarily, though not exclusively, within the United States.

Historicizing the Context of Education

It feels impossible to begin a discussion of PAR in education without reflecting first on the ideological, epistemological, geopolitical, and racialized geographies within contemporary philosophical and political trends in PK–12 public education. What does it mean to engage students, teachers, and school communities in a transformative process of democratic inquiry and meaning-making when such communities have been placed in the straightjackets of high-stakes testing and neoliberal restructuring? A second important reflection must attend to the field of educational research itself and the ways the academy has historically privileged and valued particular ways of knowing over others. What then does it mean to engage in open-ended mixed method research in which untraditionally trained researchers determine questions, design methods, and analyze and interpret data? In the following section, we open each of these areas and encourage readers to think about the challenges and tensions these realities produce for a sincere engagement with PAR in education.

Philosophical and Political Trends in Public Education

Deeply constrained by the parameters of individual economic mobility and the neoliberal press for dominance within a global competitive market, the current context of education philosophically and politically is engaged in the transmission of knowledge through standardized curriculum and high-stakes testing. Furthermore, the obligation to facilitate the learning and well-being of children and youth stems from a narrow commitment to investment conditioned on the rate of return for the degree of resources invested. In the late 1980s and 1990s, as school districts were released from desegregation rulings, the move toward resegregation took hold, with increased isolation of poor and working-class students of color and immigrant students. In the mid-1990s and early 2000s, and again in 2015 , federal policy reconceptualized equity. The movement toward atomized standards and measures of achievement and quality in education through state testing, most evident in the reauthorization of the Elementary and Secondary Education Act, shifted the equation from input to output equity (Rebell & Wolff, 2008 ) absent scrutiny on gaps in opportunity, capacity, and access to resources. The current moment in education could be described as being under the tyranny of “new managerialism” characterized by a drive for “evidence-based practice” (Davies, 2003 ) with substantial imposition of philanthropic directives and business interests tied to funding (Ball & Junemann, 2012 ; Giridharadas, 2018 ).

Given these political and policy trends, the landscape of public education is saturated in a discourse and materiality reflecting an audit culture of high-stakes standardized testing (Koretz, 2017 ) and corporate education reform (Au & Ferrare, 2015 ; Fabricant & Fine, 2012 ; Lipman, 2004 ). Educational reform in the United States is argued as opportunity through race- and class-neutral individualized school choices that has as its consequence the furthering of the racialization and economic isolation of children and youth in schools “branded” by particular curriculum and outreach to families (Cucchiara, 2013 ; Kimelberg, 2014 ; Lareau, 2014 ; Pattillo, Delale-O’Connor, & Butts, 2014 ; Posey-Maddox, 2014 ). Within education and the connective tissue of the health, legal protection, and criminal justice systems, there is ongoing dispossession of public assets and the accumulation of those assets by private entities (Fine & Ruglis, 2009 ; Harvey, 2004 ; Lipman, 2016 ).

As a result, in terms of learning and development, mental health and well-being, and physical safety, schools have been and continue to be spaces of struggle and contestation for students. This has been evidenced most recently by federal policies that have hollowed out protections for the most marginalized students, particularly youth of color; lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth; and immigrant and undocumented youth. In 2018 , the U.S. Department of Education and Department of Justice withdrew support for legal guidance discouraging schools from suspending and expelling students (Lhamon & Gupta, 2014 ). The Department of Justice and Department of Education also withdrew the 2016 legal guidance that schools treat students consistent with their gender identity (Lhamon & Gupta, 2016 ). And, most recently in 2018 , a White House memo expressed the intention to deny the existence of transgender people. This withdrawal of federal policy support and recognition has double impact for LGBTQ students, who report disproportionately high levels of in-school and out-of-school suspensions (Kosciw, Greytak, Zongrone, Clark, & Truong, 2017 , p. 48). Piled on to these shifts away from protecting youth in schools are the recent attacks on young people migrating to the United States and immigrant youth with long-term residency.

These daily lived conditions shape the contours within which PAR unfolds and challenges, raising critical considerations for a research praxis that ignites and supports the full participation and direction from youth who are structurally dispossessed and speaking out within spaces of intersecting lines of resistance.

Privileging What Has Historically “Counted” as Knowledge and the Policing of Such Matters

In addition to conditions on the ground inside PK–12 education, the horizon for educational research has lost considerable capacity for imagining many ways of inquiring into, interpreting, and altering the conditions of human experience in public education. As feminist and critical theorist Patti Lather ( 2004 ) observes about the role of the National Research Council and its 2002 report, Scientific Research in Education : “In spite of its oft-repeated intentions of balance across multiple methods, objectivity is enshrined and prediction, explanation, and verification override description, interpretation, and discovery” (p. 762). With the legislation of the Every Student Succeeds Act, the articulation of criteria for quality research includes four tiers of research standards that define the degree to which educational research is rigorous and replicable. A Foucauldian act of surveillance and control, these tiers of research frame the standardization process, with each tier involving some form of experimental or correlational design, statistical analyses, or measures of significance. The justification for these standards is the assumption that a “high-quality research finding . . . is likely to improve student outcomes or other relevant outcomes” (Every Student Succeeds Act, 8101[21]).

Given this context, critical PAR is an inherently transgressive approach in its attention to power, its privileging of the lived experiences of the most marginalized, its use of problem posing and grounded participatory methodologies, and its commitments to produce knowledge useful for political activism and community mobilization against structures of exclusion and alienation (Cahill, Rios-Moore, & Threatts, 2008 ; Caraballo, Lozenski, Lyiscott, & Morrell, 2017 ; Drame & Irby, 2016 ; Guishard, 2009 ; jones, Stewart, Galletta, & Ayala, 2015 ; Otero & Cammerota, 2011 ; Torre et al., 2008 ; Tuck et al., 2008 ; Wright, 2015 ).

PAR in Education: Predictable Tensions

Some might argue that there is an elephant in the room when one is engaged with PAR projects that take place in schools. Not all participatory research in education is located within schools, but, when it is, predictable tensions often arise. While there are ongoing struggles to reimagine education, formal educational spaces can be alienating hierarchical places where relationships between youth and adults are rigid and not rooted in equality (Irizarry & Brown, 2014 ). Students are generally positioned as receivers of knowledge who are expected to follow directions; they are rarely included in decision-making about policies and cultural practices that shape their experiences, and they often face disciplinary outcomes if they do not do as they are told. In contrast, PAR spaces are built around methodologies that encourage open-ended inquiry, assume that knowledge is co-constructed, challenge conventional power relationships, and aim to disrupt and transform oppressive conditions.

As a result of these tensions, critical PAR projects—projects that consciously incorporate feminist, critical race, decolonial, and neo-Marxist frameworks—make strategic decisions about when and how to study issues in education from within schools and when to instead operate from outside, in community organizations, recreation centers, libraries, and the streets. However, as we discuss in more depth later, regardless of research settings issues of power exist and must be negotiated. When participatory methodologies are uncritically employed, they, like any methodology, can reproduce “the very forms of oppression that participatory approaches seek to disrupt” (Drame & Irby, 2016 , p. 3). All research is vulnerable to gendered and racialized social relations (among others) that appear so natural and inevitable that their toxicity is left undetected (Hall, 1993 ). Critical PAR addresses this by engaging in ongoing questions of privilege and vulnerability throughout the research process, reflecting the theory and history of the origins of PAR.

Participatory Methodologies in the Life of a PAR Project

We work as faculty in public universities, active in formal and informal educational settings, in both classrooms and communities, with a commitment to envisioning the academy as an inclusive public space for inquiry and social action. Anne collaborates with youth, educators, and community leaders in efforts to inquire about and take action toward more equitable relations and structural arrangements in education. María spends much of her time running the Public Science Project, which brings together intergenerational and interracial collectives of academics, organizers, advocates, artists, lawyers, and policymakers to engage participatory research in the interest of transforming unjust conditions. In the next section, we draw from moments within the life of a PAR project in Cleveland, Ohio, called Lives in Transition, to illustrate a set of theoretical, methodological, and ethical characteristics and considerations when engaging PAR in education.

Lives in Transition: Constructing Knowledge and Formulating Critique on the Meaning of School Closure

As was the case in Chicago, Denver, New York City, Philadelphia, and many other urban school districts across the United States, the Cleveland Metropolitan School District (CMSD) responded to federal accountability policy and state and local school reform initiatives by closing schools in some of the poorest neighborhoods on the city’s east side, where many African American families live. The consequences of these decisions impacted the lives of youth, families, and communities for whom these schools were a part. A collective of approximately 10 high school youth, several teachers, and graduate students and faculty from Cleveland State University came together to document the historical moment and understand the meaning of these school closures for youth and interrogate the discourse of “transformation” by the district. The research collective met regularly from 2010 through 2011 . The origins of this project reflect a common characteristic of PAR beginnings, as noted in our first core dimension of PAR.

Organic and Collective Beginnings

The origins of PAR projects are often organic and collective in nature, responses to realities of groups encountering unfair or unjust historical moments. In the case of the project discussed here, the announcement that the district was going to close schools that had not met state “standards of achievement,” among other measures, interrupted the life of students in Edison High School, a school where Anne and visual artist and PAR researcher vanessa jones were working on a storytelling project. 2 The focus of their project with students in the school at that time was the nature of transitions in the lives of young people. In the midst of narrating significant turning points of their lives through spoken word, art, and music, the participating students encountered a new life transition—as the closure of their high school was impossible to ignore.

Anne, vanessa, and their youth co-researchers faced a critical situation. The storytelling project had created a space where close relationships developed amid both a nurturing and hostile school climate. On the one hand, there were classrooms where teachers understood the brilliance and struggles of their students; on the other, students had to enter the school each day through “weapon detectors” and were subjected to the use of “lockdowns” to empty the hallways. Students facing the closing of their school were filled with uncertainty, anger, and apprehension—affect and reactions that felt in stark contrast to the reform narratives being used by the local district and the federal education policy to justify the closings through the argument that school closure was a “necessary intervention” to save students from “failing” schools. The sharp difference between the “reform” discourse and student experiences signaled the need for inquiry. Ethically, it pointed to a glaring absence. Where was the expertise—the voices, experiences, and ideas—of youth and teachers attending and working inside the schools targeted for closure?

In the year that followed, students displaced by school closures and those in receiving schools were forced to navigate new spaces and relationships. Anne and vanessa decided to collaborate with teachers and graduate students to offer a space for critical PAR in an after-school program in two of the high schools receiving students displaced by school closure. In keeping with the theme of transitions, the project was named Lives in Transition, or LiT.

Recognizing Expertise Beyond the Academy

PAR is guided by experiential knowledge and recognizes the legitimacy of those outside the academy to problem-pose and conduct research about issues impacting their lives. The expertise youth brought to the LiT project was essential to documenting the experience of school closure as they were living it in the present. They wrote poetry, drew maps of their neighborhoods and bus routes, and filmed the processes of the research collective’s engagement in forms of problem-posing. Anne and vanessa brought data sources providing a broader context to the meetings, such as district reports on the criteria used for closures, newspaper clippings on how the district justified its closure decisions, documents on district and state educational policies on school transportation and the use of closed school facilities, as well as historical accounts related to neighborhoods affected by the closures. They invited guests to meetings, who brought specific information needed to complete the inquiry. Critical PAR often draws on the expertise of intergenerational collectives, wherein differentially positioned members carry varied (though sometimes overlapping) funds of knowledge. The validity of the research is strengthened by this breadth of expertise—in this case, the youth knowledge about their communities and schools as well as the adult knowledge of the law, history, or data from particular fields.

In this manner, being on the “inside” of an issue or experience brings an angle of vision likely to afford understanding of the nuances and complexity of the problem being studied. Those positioned outside the community or the study focus may raise questions that reveal gaps in understanding or investment in outsider perspectives. For example, vanessa proposed involving students in the PAR project to the administration at one of the schools receiving students displaced by school closure. The school administration declined extending an invitation to their students to participate, noting that students’ participation in PAR on the experience of school closure might “bring the pain up again” (jones, Stewart, Galletta, & Ayala, 2015 ). While the production of knowledge of those closest to the problem studied offers potential for constructing new knowledge, as indicated here it also may pose a threat to maintaining ways of knowing and being in relation that support the status quo. Alternative angles of vision offered by the youth experiencing school closure may have produced knowledge potentially disruptive to the established logic of the district’s educational policies. In this example, the transgressive nature of PAR is evident, as is the centering of the experience of youth within the construction of knowledge and the repositioning of relationships.

Discontinuities as Potential Reframing Analysis and Repositioning Relationships

PAR is attentive to discontinuities in ways of seeing a problem and the power relations at work within conflicting frames for analyzing a problem. While dissonance and disagreement can be productive to research, they are not always easy. We experienced a moment of conflict for the LiT project where youth researchers were speaking about the varying identities students possessed, which differed depending on whether they were displaced by school closure and sent to a receiving school or were in the receiving school, impacted by the presence of new students transferring in from closed schools. The conversation took place at a research meeting at Granite Hill, a high school that received students from Edison High after Edison was closed. Students and teachers were each arguing from standpoints that held deep knowledge of the experience of dislocation but with different perspectives. The conflict surfaced the reality that students from closed high schools held strong ties to their old schools, and this was reflected in their reluctance to associate themselves with the new school to which they had been transferred. It also underscored for the research collective the importance of place, socially, historically, and geographically for students and school communities, as the school closings involved relocating students across geographic and community boundaries to new schools that often had long-standing rivalries and other competitive relationships with their old (now closed) schools.

Three teachers participated in the LiT PAR collective the year after a number of schools were closed. The teachers, all African American, were recognized as strong student advocates with shared cultural connections with the youth researchers. At the same time each represented different vantage points and varying degrees of structural constraints (Kohfeldt, Chhun, Grace, & Langhout, 2011 ; Ozer, Ritterman, & Wanis, 2010 ). Students knew Ms. Drew and Ms. Turney to be teachers who responded quickly to student challenges, provided rides home when bus fare was unavailable, and supported students when families encountered health crises. The third teacher, Sergeant Goodman, directed the JROTC program. Anne and vanessa had met him through two students who joined JROTC when they arrived at Granite Hill High School, after being transferred from their closed school. He asked to join the project, and though Anne and vanessa shared a broader critique of the presence of JROTC inside poor and working-class urban and rural schools but absent from wealthier suburban schools, they recognized his relationships with the students and his desire to support the project. His presence added to diverse perspectives among the adults who were insiders to the school. vanessa was also an “insider” in many ways as her son attended Cleveland schools, and she shared common experiences of attending underresourced schools serving poor and working-class communities of color. As a member of the research collective she drew organically from these experiences as a student longing for greater “communication, expression, freedom, and forming social connections” in education (jones, 2012 , p. 193). Anne’s race and social class background positioned her at times as an “outsider,” even as her regular presence in classrooms and community meeting spaces offered meaningful relationships with students and teachers and provided exposure to intimate knowledge about what was happening inside the schools.

In this participatory contact zone of sameness and difference—within the research collective—LiT members inquired and engaged multiple positionalities, sparking lenses of analysis used in meaning-making, contestation, humor, and reflection throughout the research process. A student researcher who was displaced spoke about his feelings of loss and defended those who resisted, even resented, assimilation into their receiving school, Granite Hill High. Other youth researchers saw this as deeply problematic and even used the moment to lift the benefits of being a student at Granite Hill, boasting of its athletic prowess and superiority. In what first appeared to be playfulness within the group, there was evident a rub produced by the strong shared frustration over the policy of school closure that, while impacting each of them differently, was enforced on all of them without any control or authorizing on their part.

A youth researcher who had been at Granite Hill for several years responded critically toward displaced students who stayed loyal to their closed school. Frustration hung from the words shared, particularly by one of the teachers. In a discussion punctuated with references to teachers who did and did not help students learn, and resources the school did and did not possess, the statements became personal. Ms. Drew spoke in a raised, emotional tone in her response to a youth researcher’s observation that displaced students retained their former school’s affiliation:

What he’s saying is that, most people who consider themselves from Edison High, they were invested in their school. But if you . . . went to Edison, and you walked the hall all day then, and then your school closed, you have no right to complain. You didn’t go to class and that’s why the numbers went down , because you didn’t go to your class and that’s why Edison had to close. Because if you would have been in class then they would’ve had the numbers they needed.

This biting critique by a teacher, uncharacteristic of her reputation as a student advocate, revealed the abrasive and frequent presence of high-stakes measures as a reference point in the lives of teachers and students. These measures influenced school rankings and led to school closure, dressed up as school reform. Ms. Drew called on the assumptions of a policy context where “numbers” drove decisions that were decontextualized from the lives of youth, their families, and educators. As Ms. Drew continued she revealed her biography of struggling with displacement as a teacher. She noted her affection for her former school and its students. Along with students and other teachers, Ms. Drew had been transferred from Kensington High to Granite Hill just that year. The tension created by her passionate comments forced the research collective to acknowledge that the threat of school closure bleeds into the everyday life of all schools in the district including “receiving schools.”

Ms. Drew: I came from Kensington. I love Kensington . . . I’ve seen plenty of kids . . . that graduated . . . that’s my school. vanessa: So that was a part of the story— Sergeant Goodman: Their pain could be your pain. As easy as Edison High closed, Granite Hill could be next. Ms. Drew: That’s right. Sergeant Goodman: And truth be told Granite Hill is on that list.

We see in this strained moment the created space for problem-posing, in the Freirian sense, as LiT members actively engaged in working out together and naming their “reality” as students and teachers, reflecting on differing and similar experiences of youth and of teachers. In this way, the LiT members came closer to understanding themselves to be “in a situation,” as Freire might say, coming closer to “the very condition of existence” (Freire, 1970/2016 , p. 109). The clash of ideas and interpretations created deeply pedagogic moments relationally and conceptually. Through their own enactments, the very dynamics of what they were studying surfaced. At its best, PAR produces critically pedagogical spaces where tensions and dissonance spark learning for everyone in the collective , not just the youth or the adults, and new possibilities in knowing and being in relation can be imagined.

Situating Lived Experiences of Youth Within Broader Structural Conditions

Within PAR, critical inquiry and ethical praxis situates lived experiences of youth within broader structural conditions. What happens within the PAR collective often speaks to what is happening in the broader context, influencing what students and educators are experiencing within schools. Here LiT members were also engaged in a form of what Drame and Irby ( 2016 ) refer to as interpersonal reflexivity, which interrogates positionalities and the nature of relationships within and beyond us (see also Chiu, 2006 ; Nicholls, 2009 ). Collectively there is a role for reflexivity within critical PAR where as a group we might pause and examine what is happening within the PAR collective to understand how it may be influencing the conceptualization of a project, data collection, analysis of the data, and/or reporting back results. Interpersonal reflexivity involves deliberate attention to the contextual layers of analysis and relations of power operating within the research. As Cammarota and Fine ( 2008 ) write, knowledge gained from research “should be critical in nature, meaning that findings and insights derived from analyses should point to historic and contemporary moves of power and toward progressive changes improving social conditions within the situation studied” (p. 6).

In this manner, ethical considerations impacted analytical practice and reporting back strategies. It meant attending to a broader context within which LiT youth researchers, educators, and university faculty worked together. At the state level, legislation in 2012 had altered school funding policies to allow CMSD to share a portion of local funding with charter schools the district deemed high performing. State per-pupil funding followed students out of district schools and into charter schools as a result of provisions of No Child Left Behind, as one of several consequences for districts with underperforming schools. Also, federal funds flowed to states through legislation specifically supporting the establishment of charter schools. Schools faced closure, followed by the opening up of educational facilities once publicly owned to privatized entities through charter school start-ups and new theme-based district schools in partnership with industry and nonprofit organizations.

These broader structural conditions and their historical significance provided the interpretive material to document the “webs of power that connect institutional and individual lives to larger social formations” (Weis & Fine, 2004 , p. xxi). These considerations were evident in the creative product as LiT prepared to communicate findings to the public. In a performative sharing of pain associated with school closure and the power in reframing this policy as unjust, vanessa jones and Eric Schilling integrated the poetry, images, and narratives of LiT members and produced a film, Lives in Transition: Eviction Notice (jones & Schilling, 2011 ). The film reflected the creative work of the youth in naming their reality and using creative arts to convey the findings from the PAR project to “retrieve and correct official or elitist history and reinterpret it according to class interests” (Fals-Borda, 2001 , p. 30). The metaphor of eviction reflected the realities of the lives of the youth, experienced in residential mobility. Now, as a result of state and local intervention through school accountability policies, students experienced the imposition of a decision with profound relational and material consequences. This counterstory was conveyed in the film.

In the spirit of questioning, a core value and epistemic activity in critical interpretive perspectives, we can see that the beginnings of PAR projects frequently emerge from a critique of dehumanizing structural arrangements and alienating cultural discourse. Those for whom the critique is most profoundly embodied play a central role in the participatory inquiry and action, displacing notions of expertise common within the academy. The tasks of engaging in dialogue and problem-posing often lead to discontinuities in understandings as situated standpoints produce differences in ways of being and knowing. In the next section, we discuss an additional dimension of PAR as we consider ethical commitments within collective production of knowledge.

Layering Collective Analyses

Participatory analysis in PAR involves a layering of collective analyses with critical theory and ethical praxis. The iterative process creates openings for deeper understandings. As the research process unfolds and analyses become more nuanced, new inquiries can organically emerge. Often new questions are prompted by shifting sociopolitical contexts—perhaps evolutions of issues that sparked the research in the first place. This in turn can inspire additional methods, data, and/or analyses.

After the first group of LiT youth researchers left the project to pursue jobs, family responsibilities, and postsecondary education, another group of 25 young people joined the project and extended the work of the earliest LiT collective. This second phase of the LiT project decided to build on earlier analyses with a survey of youth experiences of educational transitions imposed on students, their families, and teachers, without their deliberation. The survey was administered to 258 students across the seven schools that the 25 youth researchers attended, some of which were neighborhood comprehensive high schools while others were recently established theme-based district schools.

The decision to create the survey reflected a continued desire to flesh out and fill in the absent student expertise in the conversation about school reform. Collecting more data on school closure, students changing schools, student–teacher relationships, and transportation challenges from the perspective of the students in the district promised a more nuanced analysis. Notably, it represented an ethical praxis within PAR to center the knowledge and rights of those most impacted by the conditions being studied. The initial LiT research revealed that teachers and students were invested in their teaching and learning and had often built strong communities in their “failed” schools, and the data called the dominant discourse on “failing schools” into question. In this way the emphasis within PAR to engage iterative inquiry processes grounded in lived experiences, layered with critical sociopolitical analyses of contemporary and historical policy and practice, enabled the LiT collective to avoid slipping into reproducing prevalent analyses that stereotyped and dismissed the experience of students and teachers. Drawing on the lessons of DuBois and Freire to resist these seductive and simplistic individual-level analyses that obscure the responsibility of broader sociopolitical power reflects an ethical stance within PAR. Ontologically, this interpretive stance opens space for understanding the realities encountered by students in relation to the conditions under which they are forced to live.

In reviewing the survey data, the LiT research collective engaged in an analytical conversation with data from across the life of the first and second phase of the LiT project, alongside analyses of local history, educational policy, and current structural conditions. For example, survey data showed that 59% of the ninth-grade students said students and teachers did not get along very well. This large percentage signaled a serious break in relationships central to meaningful learning and social and emotional safety among students and teachers. It concerned members of LiT in that it echoed dominant narratives of teacher indifference and student recalcitrance. However, student data also indicated teacher qualities that the collective agreed were important, such as teachers encouraging critical thinking and challenging their students to work hard. Some of the open-ended data on the impact of school closure indicated grief and anger over the severing of productive student relationships with teachers.

How would this apparent contradiction in the data be represented in the reporting back of research findings? This presented not only a question about interpretive validity but also a question about ethical responsibility. As noted by Guishard et al. ( 2018 ), “Knowing and knowledge production inherently come with an epistemological responsibility that is simultaneously, an ethical responsibility” (para. 40). Guishard et al. underscore the ethics inherent in data interpretation and with Thomas Teo call upon researchers to be aware of the responsibility researchers have to interrogate their frames of analysis in order to avoid the reproduction of harm through what Teo ( 2011 ) refers to as epistemological violence directed at communities that have been and may be further marginalized when “equally plausible interpretations of the data are available” and not accessed (p. 247). What interpretation offered validity from a critical and multilayered analysis?

After some discussion of what contributes to teachers and students not getting along, Anne and her university colleagues drew from transcripts of PAR meetings in the first phase of LiT that spoke of strained relationships among students and between students and teachers as schools closed and schools in other neighborhoods received displaced students. Holding together the different forms of data as well as the social and political history in the district allowed the collective to develop a more contextualized and complicated interpretation of survey data.

For example, when the youth researchers dug deeper into the data on students attending multiple schools, they found most of the students responding to the survey reported changing schools at some point in their K–8 trajectory, with 35% reporting having changed schools five to nine times and 6% indicating that school changes occurred more than nine times (Steggert & Galletta, 2018 ). These staggering numbers felt like an important contradiction within a district that uses a K–8 school structure in order to maintain continuity across the elementary and middle school grades. The data points sparked a shift in analysis within the research collective, wherein the phenomenon of “teachers and students not getting along” was no longer easily understood as teacher or student obstinance or disrespect.

Instead a more nuanced interpretation emerged that considered forced relocation; alienation; interrupted student–teacher relations; and severed family and community roots, traditions, and practices. This produced a key theme in the LiT findings: school closure and frequent changing of schools was associated with challenges for youth socially and academically. Situated analytically in relation to the history of school reform initiatives carried out in the district, often exacerbating students’ access to educational opportunity, the data supported LiT’s critique of reform initiatives that failed to actually improve their schools, particularly those serving the most economically stressed neighborhoods. Youth researchers prepared creative products such as video, poetry, and music to report back findings specific to their schools, presenting their findings in classrooms and engaging students who participated in the survey in further problem-posing through these discussions (Giraldo-Garcia & Galletta, 2015 ).

The inclusion of sociopolitical analysis is a key element of a critical PAR praxis, one that involves illuminating the connections between “personal, micro-level experiences of sociopolitical inequities to larger macro-level sociological forces” (Wright, 2015 , p. 196). Wright links this form of analysis to Freire’s concept of critical consciousness, of grasping that which was “not perceived in its deeper implications (if indeed it was perceived at all)” (Freire, 1970/2016 , p. 83). Cahill, Rios-Moore, and Threatts ( 2008 ) engage similar analyses by posing three levels of interpretation, each intertwined with forms of social action: (a) involving looking “closely,” questioning, and examining how lived experience is influenced by broader economic and ideological processes; (b) seeing oneself and one’s community as connected to often unexamined histories; and (c) envisioning with others what could be possible as alternatives to the current struggles (pp. 90–92). We next examine what happened as the research collective engaged individuals and groups in positions of political power and influence when youth researchers and adult allies reported back their research findings.

Ethical Praxis and Epistemological Commitments

PAR opens up spaces within collectives of individuals differently positioned and engages standpoints of power and vulnerability. In doing so, dissonance and conflict arise, signaling moments of discontinuity. These moments offer potential for reframing existing knowledge and relationships. They also may result in the shutting down of transformative possibilities.

This is evident in the experience in which members of LiT reported back survey results. For example, LiT met with the leadership of the School Reform Partnership within Cleveland, the public-private partnership charged by the state with overseeing the city-wide school reform plan, to inform members of its board of the results of the survey. The School Reform Partnership involved elite membership of the city and county business leadership, influential private foundations, a charter organization supported by wealthy donors, higher education leadership, and local religious, community, and parent representatives.

Youth researchers Dana and Marcus arrived with Anne at the building that housed a major city foundation, where the School Reform Partnership also shared office space, described by Marcus as “really corporate-like.” When greeted by the director of this organization, it became clear the LiT reporting back session would take place with this individual and two staff, not the entire board of directors.

Marcus, Dana, and Anne shared the survey findings on the issue of school transportation, relationships between students, student–teacher relationships, frequency of students’ changing schools, and school closure. The clash of perspectives and vast differentials of power produced a stark clarity about how the district’s reform policy did not take the grounded experiences of students and teachers into account. It provided further evidence of one of the early themes of the first phase of the LiT research, that the reforms “were happening to us” without any form of participation along the way. Anne’s notes taken immediately after the meeting capture some of the exchange:

At one point Marcus spoke about what it was like to be at Granite Hill High School, designated by the district as an “investment” school. He talked about seeing his teachers face job insecurity in the school reform policy that required teachers to be interviewed for positions they had held previously, some for a long time. He noted, “students didn’t know if their teachers would be there” the following year . . . The Director of the School Reform Partnership seemed caught off guard by Marcus’ statement, his expression of concern for his teachers, and his affection toward his school. She commented that she hadn’t seen the reform strategies in the same way. Wouldn’t a student at Granite Hill express dissatisfaction with their school [given how poorly the school was performing]? There appeared to be some disjuncture evident to her at that moment, some gap between Marcus’ critique of the reform plan and her logic that “investment schools” were a way to remedy “failing schools.” She said something about not realizing students might love their schools even when their schools “failed” them.

The disjuncture at this moment within the meeting revealed a clear discontinuity of standpoints, commitments, and relations of power. At the same time, it offered the potential for producing new understandings. However, the potential opening apparent in this instance was not sustained or engaged. There was no opportunity to explore it further and produce new understandings and possibly reconfigure relationships or reframe the problems associated with underperforming schools in high-poverty neighborhoods. School closure and replacement, a possibility for Marcus’s school, was referred to as “inevitable” more than once by the director of the School Reform Partnership in talking with the LiT members. This reconnected to a moment three years earlier in the first phase of the LiT project when it was acknowledged that Granite Hill High School was “on the list.” This reference to a set of policy enactments that hung over students and teachers, something out of their control, was noted in a debriefing following the meeting of LiT with the partnership director. The following is an excerpt from the debriefing:

Anne: What point do you think engaged them the most? Marcus: Probably between transportation and school closings, school closings came up a lot. Dana: Yeah. Marcus: To the point that they’re unavoidable, or well, not unavoidable—they’re pretty much gonna happen at some point. Dana: Inevitable. Marcus: Yeah. Dana: Yeah and they kinda expressed that it's not necessarily all within their power if schools are closing but they agreed we need to make other aspects of students’ transition easier.

The naturalizing of the district’s reform strategy of school closure was so threaded through the conversation between the partnership leadership and the LiT members present that it appeared normative. This is evident in Marcus’s and Dana’s replication of the language of inevitability. Equally disturbing is the durability of statements repeated as real by Dana and Marcus when they reflected the director’s skirting of authority in the partnership’s involvement with school closures. In a setting where youth voice was presumably “heard,” the solution offered by the director during the meeting was to ease the transition for students but not end the policy of school closure. As noted by Anderson ( 2017 ), “In schools and districts, spaces for PAR open and close with frequency, making them risky and difficult to sustain when they challenge ‘NPM [new public management]’” (p. 440). The space of dissonance with its potential for transformation was cut short.

In the LiT project, this was evident in the discontinuity that surfaced, however momentary, in the meeting between LiT members and the School Reform Partnership director. Opening space for altering existing ways of knowing and being in relation, for interpretive ambiguity, and for relational dissonance creates cracks and fissures in the status quo from which transformational change might emerge. This level of change can feel impossible at times, for as Freire ( 2016 ) quotes from an unpublished work of José Luiz Fiori, “the structure of domination is maintained by its own mechanical and unconscious functionality” (p. 51, n 6). In the LiT project this dominant resistance was evidenced by the director’s ultimate dismissive statement of school closure as “inevitable.” Her comment, and the dissonance it created, provoked the LiT collective to spend time thinking about their own goals for their research, the ethics of representation, how the data they collected might be used for and against communities to which they felt responsible, which audiences were most important to them, and how they might best be engaged.

Engaging Action

In the iterative movement between inquiry and action throughout the life of a PAR project, the “action” of problem-posing takes as many forms—a reflection of the many different theories of change held by individual researchers and/or research collectives (Tuck & Yang, 2013 ). Typical understandings of action may involve engaging communities of interest in the findings of a PAR project or carrying out strategies responsive to the research findings, such as a plan to address issues uncovered through the research. Many PAR projects also recognize the transformative experiences of members of the research collective as actions (Zeller-Berkman, 2007 ). But actions can also occur or engage those who are “insiders to the problem” who were not involved in the PAR project, as well as press those not directly impacted but who are in positions of power as it relates to the research findings.

Engaging “outsiders” or those whose lives appear not to be directly impacted by the findings can be challenging to collectives interested in provoking sustained changes in thought and action. Moving a listener or, more broadly, an audience toward engaged witnessing from a position of bystanding (Watkins & Shulman, 2008 ) requires forms of “mutual implication” that some have been successful achieving through embodied and performative methodologies (Stoudt, Fox, & Fine, 2012 ). This is not an easy, or always possible, process. There are instances when opening understandings of mutual implication and/or a sense of connected futures are impeded by seemingly intractable dynamics of privilege that refuse to concede conditions of power (Bell, 1995 ). As a result, the ethical and epistemological commitments of critical PAR insist that collectives intentionally address ideological and structural relations. In the case of the LiT project, this meant deepening an understanding in the political and economic investments in corporate school reform.

To reach insiders familiar with the challenges young people faced within an increasingly privatized approach to school reform, such as other students and teachers, as well as those in decision-making positions in the district, the LiT collective agreed to present its findings at a prestigious city-wide gathering attended by youth, educators, district officials, and members of the School Reform Partnership. Sharing their mixed method study, including the survey data and autoethnographic texts, the youth researchers skillfully layered their lived experience in relation to historical and structural conditions. Youth in the audience, who had not been involved in the research, joined the LiT members at the podium twice, first to narrate stories from the open-ended survey data on transportation challenges getting to and from school and second to convey students’ responses to school closure.

Having deliberated on how best to offer a contextually valid frame from which to present survey findings, Marcus explained survey data and shared his grounded experience in school. During his part of the presentation, his focus was on the complex predicament students and teachers found themselves facing as their lives were shaped by the imposition of high-stakes state testing impacting students’ ability to graduate, teachers’ security in their jobs, and the longevity of schools to serve their communities. Marcus situated the finding that 59% of the ninth-grade students indicated that students and teachers did not get along in the fragile state of relations at the classroom level, revealing the complicity of local and state policy in creating untenable educational conditions:

stress might cause students and teachers to be more edgy towards each other due to the teacher being pressured about getting good scores. Teachers are evaluated on 4 dimensions of their teaching, which accounts for 50% of their evaluation. The other 50% is the scores students get on the state tests. This can lead to teachers getting stressed along with the students, which would alter the ways students and teachers would interact with each other. Teachers and students would be on edge and would react in negative ways. Not only that, but teachers' jobs would be on the line and students wouldn’t be able to do anything about it. (Galletta et al., 2014 )

In addition to forums for engaging differentially positioned audience members in research findings, other forms of PAR-related action may involve boycotts, walkouts, the use of performance for analysis and sharing back findings (Fox, 2011 ), securing agreements with administrators for school change (Ozer et al., 2010 ), accessible “back pocket reports” and open letters (Stoudt & Torre, 2014 ), social media activism, and messaging through hashtags, t-shirts, buttons, and the creative arts (Otero & Cammarota, 2011 ; Stoudt et al., 2015 ). Common threads across these forms of action provide a distinct break with existing ways of knowing and being in relation and an upending of that which is presumed natural or inevitable. In this manner, PAR addresses epistemological commitments and ontological imperatives as it reflects the desire among those most impacted by a social or educational problem to give it meaning and transformative potential, thus producing what Fals-Borda and Rahman ( 1991 ) refer to as “countervailing power.”

Through the story of the LiT project, we have illustrated critical moments within a PAR project when tensions flared as to the meaning of educational policy and its impact on students and teachers. In an active effort to spark change in the district and share research findings with the city’s leadership responsible for recommending school closure, members of the LiT project encountered contestation over what meaning youth gave to their relationships with teachers in academically struggling schools. The implications of the divergence were dismissed, school closure was labeled inevitable, and the effort to reframe the impact of school closure was shut down.

However, when tensions within PAR can be sustained, new meanings and new ways of being in relation surface. By staying open to different interpretations of data on “teachers and students not getting along,” the LiT research collective suspended the socially dominant discourse on “bad teaching” or “problem students” and pursued additional data sources. This enabled a deeper understanding of what was happening within and beyond classrooms that affected relationships between students and teachers. Contradictions that emerged in the clash between students’ lived experience and the city’s school reform logic offered the potential to generate new understandings. The participatory contact zone of the research collective held the dissonance and encouraged an interrogation of power that destabilized the privileged discourse and knowledge structures.

As the attacks on public education continue—and as capitalism, the rise of white supremacy, and heteropatriarchy strengthen—we find ourselves with a heightened sense of urgency for new ways of seeing, hearing, and understanding. We believe a PAR framework has the ability to create solidarity spaces for inquiry that can produce necessary knowledge for justice struggles in education and beyond. Participatory spaces are where people can come together across a continuum of privilege and vulnerability to make meaning of the conditions under which we are living, with each other, for our collective liberation. The extensive reach of privatization within public education, the narrowing public governance to business and philanthropic interests and priorities, and the deceptive branding of corporate reform as “equity” is sobering. PAR offers a research praxis of countervailing power and accumulative tremors to agitate static ways of knowing and being in relation and makes possible a generative approach to collective inquiry for transformation.

Acknowledgments

We acknowledge the contributions of Dr. vanessa jones to the Lives in Transition project, the support of Dr. Carmine Stewart, and the creativity, questioning, and care among the youth researchers, educators, graduate students, and community members who participated in our collective over multiple years.

Further Reading

• Cahill, C. , Rios-Moore, I. , & Threatts, T. (2008). Open eyes—Different eyes: PAR as a process of personal and social transformation. In J. Cammarota & M. Fine (Eds.), Revolutionizing education: Youth participatory action research in motion (pp. 89–124). New York, NY: Routledge.
• Cammarota, J. , & Fine, M. (Eds.). (2008). Revolutionizing education: Youth participatory action research in motion . New York, NY: Routledge.
• Caraballo, L. , Lozenski, B. D. , Lyiscott, J. , & Morrell, E. (2017). YPAR and critical epistemologies: Rethinking education research . Review of Research in Education , 41 , 311–336.
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• Fals-Borda, O. , & Rahman, M. A. (Eds.). (1991). Action and knowledge: Breaking the monopoly with participatory action-research . New York, NY: Apex.
• Freire, P. (2016). Pedagogy of the oppressed . New York, NY: Bloomsbury. (Original work published 1970.)
• Galletta, A. (2017). Exploring generative dissonance: Inten[s]ional states and relational interruptions . Social & Personality Psychology Compass , 11 (9).
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1. When using the term participatory action research or PAR in this article we are referring to a framework that attends to relational, structural, and cultural arrangements of power throughout the research process. While at times we signal this specifically by describing the approach as “critical,” for the ease of reading we ask the reader to understand that this is always implied.

2. Although the city, school district, and university are identified, all student, teacher, and high school names are pseudonyms.

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Qualitative study design: Action research

• Qualitative study design
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Action research / Participatory Action Research

These methods focus on the emancipation, collaboration and empowerment of the participants. This methodology is appropriate for collaborative research with groups, especially marginalised groups, where there is more flexibility in how the research is conducted and considers feedback from the participants. 

Has three primary characteristics:  

Action oriented, participants are actively involved in the research.

involvement by participants in the research, collaborative process between participant and researcher - empowerment of participants. The participants have more of a say in what is being researched and how they want the research to be conducted.

cycle is iterative so that it is flexible and responsive to a changing situation.  

• Questionnaires
• Oral recordings
• Focus groups,
• Photovoice (use of images or video to capture the local environment / community and to share with others)
• Informal conversations 

Produces knowledge from marginalised people's point of view and can lead to more personalised interventions.  

Provides a voice for people to speak about their issues and the ability to improve their own lives. People take an active role in implementing any actions arising from the research. 

Transforms social reality by linking theory and practice.  

Limitations

Open ended questions are mainly used, and these can be misinterpreted by researcher – data needs to be cross-checked with other sources.

Data ownership between researcher and research participants needs to be negotiated and clearly stated from the beginning of the project.

Ethical considerations with privacy and confidentiality.

This method is not considered scientific as it is more fluid in its gathering of information and is considered an unconventional research method – thus it may not attract much funding.

Example questions

• What is the cultural significance of yarning amongst Aboriginal people?  

Macro Question:

• “What would it take to improve the stability of young people’s living situations?”  

Micro Questions:  

• “What can we do to better engage with accommodation service providers?”  
• “What can we do to improve the service knowledge of young people?”  
• “What can we do to measure stability outcomes for our clients?”  

(Department of Social Services)  

Example studies

• Miller, A., Massey, P. D., Judd, J., Kelly, J., Durrheim, D. N., Clough, A. R., . . . Saggers, S. (2015). Using a participatory action research framework to listen to Aboriginal and Torres Strait Islander people in Australia about pandemic influenza.  Rural and Remote Health , 15(3), 2923-2923.  
• Spinney, A. (2013). Safe from the Start? An Action Research Project on Early Intervention Materials for Children Affected by Domestic and Family Violence. Children & Society, 27(5), 397-405. doi:10.1111/j.1099-0860.2012.00454.x 
• Department of Social Services. (2019).  On PAR  - Using participatory action research to improve early intervention. 
• Liamputtong, P. (2013). Qualitative research methods (4th ed.). South Melbourne: Oxford  University Press. 
• Mills, J., & Birks, M. (2014). Qualitative Methodology: A Practical Guide. Retrieved from https://methods.sagepub.com/book/qualitative-methodology-a-practical-guide doi:10.4135/9781473920163 
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Organizing Engagement

Advancing Knowledge of Education Organizing, Engagement, and Equity

Participatory Action Research and Evaluation

A community-driven approach to research, evaluation, and social change that intentionally includes the people who are most affected by an inquiry in the design and execution of the process, participatory research and evaluation overview.

Participatory approaches to research and evaluation intentionally include the people and groups who are most affected by an inquiry in the design and execution of the process. Participatory forms of research and evaluation help to ensure that the methods and findings reflect the perspectives, cultures, priorities, or concerns of those who are being studied. Because students, parents, community members, or other stakeholders are given active roles in a participatory research or evaluation process—and therefore roles in producing new knowledge or insights about their school, organization, or community—participatory research is a foundational and widely used strategy in organizing, engagement, and equity work. 

While participatory approaches to research and evaluation can take a wide variety of forms, and many different methodologies (both quantitative and qualitative ) may be used to achieve different objectives, participatory approaches to research and evaluation can be organized into three broad categories:

• Participatory research is typically conducted by academics and other professional researchers who involve or collaborate with the individuals and groups that would have traditionally been considered the “subjects” of a study. The primary intention of many formal forms of participatory research—such as projects supported by academic institutions or philanthropic foundations—are to make a contribution to expanding knowledge in a scholarly or professional field, rather than directly change the communities, organizations, or groups being studied.
• Participatory action research (commonly abbreviated as PAR) is intended to study and change a particular community, neighborhood, school, organization, group, or team. Participatory action research might be used to shape the design of a new initiative, inform the execution of an organizing campaign, provide evidence supporting a particular political position, or increase understanding of a local issue or problem. Participatory action research initiatives are typically designed and led by local practitioners and community members, though they may collaborate with professional researchers and evaluators on both the design and execution of the process. → Youth participatory action research (or YPAR) is a common form of participatory action research that is designed and conducted by youth leaders, typically working in collaboration with adult mentors. While youth participatory action research utilizes the same general methods and approaches as adult-led forms of participatory action research, adult mentors usually provide developmentally appropriate guidance and support to the youth researchers leading the research process.
• Participatory evaluation (PE) is used to assess the effectiveness or impact of a program, process, or plan either during or after implementation. Participatory evaluations are either conducted by professional evaluators who utilize a participatory approach, or they are designed and led by local practitioners and community members who may or may not collaborate with professional evaluators.

Participatory approaches to research, action research, and evaluation are based on similar philosophies, theories, and methods. For example, they start with many of the same underlying assumptions, such as:

• People don’t need advanced degrees or professional credentials to conduct valuable research.
• All groups and cultures have their own biases, including professional researchers and evaluators who are trying to remain “neutral” or “objective” observers.
• Everyone can contribute valuable expertise, insights, and knowledge to a research or evaluation process.
• Those who are closest to an issue, problem, or program generally know the most about it.
• The involvement of diverse participants with different perspectives can help researchers, evaluators, practitioners, and community members produce insights that are less biased and closer to the truth. 

In addition, both participatory action research and participatory evaluation are rooted in similar social-justice theories, especially theories related to the democratization of knowledge , which refers to the perspective that individuals and groups have the right to construct their own narratives, produce their own knowledge, and make sense of their own experiences. 

This introduction will discuss the two forms of participatory research that are most accessible to local leaders, organizers, and practitioners involved in organizing, engagement, and equity work: participatory action research (PAR) and participatory evaluation (PE) .

Participatory Action Research Defined

One of the more influential definitions of participatory action research was developed by Peter Reason and Hilary Bradbury, editors of The SAGE Handbook of Action Research: Participative Inquiry and Practice :

“Action research is a participatory process concerned with developing practical knowing in the pursuit of worthwhile human purposes. It seeks to bring together action and reflection, theory and practice, in participation with others, in the pursuit of practical solutions to issues of pressing concern to people, and more generally the flourishing of individual persons and their communities.”

Participatory action research and youth participatory action research are a subset of the broader field of action research , which Richard Sagor, author of Guiding School Improvement with Action Research , defines as:

“A disciplined process of inquiry conducted by and for those taking the action. The primary reason for engaging in action research is to assist the ‘actor’ in improving and/or refining his or her actions.”

Reason and Bradbury provide further elaboration on participatory forms of action research:

“Action research is a family of practices of living inquiry that aims, in a great variety of ways, to link practice and ideas in the service of human flourishing. It is not so much a methodology as an orientation to inquiry that seeks to create participative communities of inquiry in which qualities of engagement, curiosity, and question posing are brought to bear on significant practical issues. Action research challenges much received wisdom in both academia and among social change and development practitioners, not least because it is a practice of participation, engaging those who might otherwise be subjects of research or recipients of interventions to a greater or less extent as inquiring co-researchers. Action research does not start from a desire of changing others ‘out there,’ although it may eventually have that result, rather it starts from an orientation of change with others.”

In formal academic contexts, action research and participatory action research are often contrasted with more traditional research approaches—specifically positivism and interpretivism —that are typically conducted by independent academic or professional researchers who do not involve “subjects” in the design or execution of the research process. While traditional research studies usually culminate in a written report of findings, and PAR projects often do as well, a primary objective of participatory action research is to effect change in a community, organization, or program or to improve the practice and effectiveness of individuals and teams.

While there are multiple—and sometimes conflicting—definitions of the two related concepts, action research generally refers to processes that are undertaken largely or exclusively by professionals, such as teams of school administrators or teachers. That said, some scholars or practitioners may use the term action research when describing forms of research that are considered participatory action research to others.

In certain contexts, participatory action research may also be called critical participatory action research , community action research , or community-based participatory research , among other terms, and different terms may represent divergent philosophical or methodological approaches to PAR.

Participatory Evaluation Defined

The primary distinction between participatory evaluation and participatory action research is that “PE” typically studies the implementation and impact of a specific program or process that has already been developed, while participatory action research typically investigates larger community issues or problems to inform the development of a new or emerging program or process. Both PAR and PE study past and current events to directly inform and influence future events.

In an influential 1998 article, “ Framing Participatory Evaluation ,” J. Bradley Cousins and Elizabeth Whitmore proposed two primary modes and objectives of participatory evaluation:

• Practical Participatory Evaluation (P-PE): “The core premise of P-PE is that stakeholder participation in the evaluation process will enhance evaluation relevance, ownership, and thus utilization.” According to Cousins and Whitmore, utilization has three primary uses or effects: “(1) instrumental, the provision of support for discrete decisions; (2) conceptual, as in the educative or learning function; and (3) symbolic, the persuasive or political use of evaluation to reaffirm decisions already made or to further a particular agenda.”
• Transformative Participatory Evaluation (T-PE): “Transformative participatory evaluation invokes participatory principles and actions in order to democratize social change.” According to Cousins and Whitmore, “Several key concepts underpin T-PE. Most fundamental is the issue of who controls the production of knowledge. One important aim of T-PE is to empower people through the process of constructing and respecting their own knowledge (based on Freire’s notion of ‘ conscientization ’) and through their understanding of the connections among knowledge, power, and control…. A second key concept relates to the process. How is the evaluation conducted? The distance between researcher and researched is broken down; all participants are contributors working collectively…. A third concept, critical reflection, requires participants to question, to doubt, and to consider a broad range of social factors, including their own biases and assumptions.”

Participatory Action Research and Evaluation Methods

As Bradbury and Reason discuss above, participatory action research is “not so much a methodology as an orientation to inquiry .” That said, participatory action researchers and evaluators utilize a wide variety of formal and informal research methods, whether it’s quantitative research methods such as statistical analyses or qualitative methods such as observations of group interactions that are documented and analyzed to reveal themes, patterns, and insights.

Regardless of the specific method being used, a participatory action research or evaluation process always includes stakeholders—i.e., those who are involved, served, or affected—in the design and execution of the process.

A few common methods include:

• Structured one-on-one interviews that may use a standard protocol and questionnaire.
• Facilitated small-group or focus-group conversations with stakeholders (in some cases, PAR focus groups will include representatives of a single stakeholder group, such as students, while in other cases the participants will be selected from multiple groups).
• Facilitated dialogues or community forums with larger groups of stakeholders in which opinions, ideas, or recommendations are documented.
• Stakeholder surveys, especially surveys that include open-ended responses that allow respondents to describe their viewpoints or surveys that are design, executed, and analyzed by members of the groups being surveyed.
• Observations of relevant activities such as teacher-student or teacher-parent interactions using a standardized observation process or set of criteria.
• Group processes that identify and document—sometimes using illustrations, diagrams, or maps—school, community, or organizational problems, resources, or cultural dynamics.
• Analyses of documents such as reports, policies, curricula, news coverage, or stakeholder narratives.
• Photo, video, or audio documentaries and oral histories produced by stakeholders.
• Historical and ethnographic inquiries.

Participatory Action Research Strategies

Given that participatory action research can take a wide variety of forms, any concise description—such those above—is likely to omit important elements or methods. The following descriptions will help illustrate a few common features of participatory action research—features that also apply to participatory forms of evaluation.

To help put these features in context, the descriptions below also include case examples that illustrate how a PAR process might work in a real-world educational context. In this hypothetical case, a public school—”Sample High School”—is exploring new ways to approach student discipline because behavioral problems and disciplinary rates have been increasing for a few years. 

1. PAR includes stakeholders in most or all aspects of the process.

In a participatory action research process, those who are affected by a problem, served by a public program, or employed by an organization have roles in each stage of the project’s execution. For example, participating stakeholders will be involved in the initial identification of the problem to be studied; the design of the research process or methods; the collection, documentation, and analysis of data; and the implementation of new approaches that result from the insights, lessons, and findings that emerge from the research. A participatory action research process is fundamentally inclusive and democratic, and the most effective projects involve a diverse and representative cross-section of staff and stakeholders.

CASE EXAMPLE: Historically, Sample High School administrators made unilateral decisions about disciplinary policies and their enforcement based on social traditions, subjective perceptions of what worked or didn’t work, and an incomplete understanding of the causes of student behavioral problems, which were often based on flawed assumptions about students and families. As a result, disciplinary policies and practices sometimes changed, but the results of those policies only worsened over time. Once the problem became too severe to ignore any longer, the school’s administrative team decided to use a participatory action research process to help them better understand the problem. The administrators began by enlisting a team of student, teacher, and family representatives to help them develop and execute a plan.

2. PAR is conducted with participants, not on participants.

In a participatory action research process, students, parents, or community members—i.e., those who would be viewed as “subjects” in a traditional research study—are enlisted as “co-researchers.” In a PAR process, community participants become collaborative researchers who either work alongside professional researchers and evaluators, or they become community-based leaders of an action-research project that involves other community members. The insights that emerge from a PAR process are therefore the products of a working collaboration, rather than the products of professional researchers working independently of those being observed and studied.

CASE EXAMPLE: Rather than simply change disciplinary policies in the school—and hope they produce better results—Sample High School’s administrators and stakeholder PAR team instead decided to develop a deeper understanding of why existing disciplinary policies were not working. The PAR team collaborated with a nearby university, and students, teachers, and family volunteers received training in group facilitation, data collection techniques, survey methods, and other action research techniques. The PAR team then developed a set of research questions that they posed to students, parents, and staff during focus-group discussions and in an online survey. A significant percentage of the school’s student, staff, and family population was ultimately involved in the process as a leadership-team member, focus-group facilitator, or study participant.

3. PAR is “ transformative rather than merely informative ” (Baldwin, 2012).

The goal of a participatory action research process is to improve a program, process, or practice or to solve real-world problems. In many cases, participatory action researchers will begin to address a problem during the execution of a PAR process, or they will immediately use PAR findings to change their school, community, or organization after the process is completed. The term action refers to the transformative goals of PAR, the active involvement of participants, and the real-world actions taken by participants during and after a PAR process. While the resulting “actions” may be tangible changes in policies, programs, or practices, a fundamental transformation in the beliefs, perceptions, or worldviews of the people involved is another common result of PAR. For example, people may realize that their perceptions of a community group are based on biased assumptions or they may recognize that issues they formerly considered to be personal problems, such as poverty or low academic achievement resulting from families and students not working hard enough, are linked systemic causes in society.

CASE EXAMPLE: When Sample High School’s students, families, educators, and administrators came together to analyze and interpret the PAR data, each group gained a new and more nuanced understanding of the problem—and of each other. It also became apparent that several relatively simple adjustments could be made to existing discipline policies and practices to improve interactions between students and educators. As these improvements were implemented, the PAR team continued to collect and study discipline data, while also educating themselves about alternative disciplinary practices that had been effective in other schools.

4. PAR is often conducted in cycles.

While a participatory action research process may have a defined start and end, PAR is often a method of ongoing practice and reflection . In these cases, PAR may follow a cyclical process of observation, reflection, action, evaluation, and modification (see image below), with each cycle yielding new insights or improvements. Similarly, participatory action research may also take the form of a series of connected research projects with defined start and end dates that cumulatively build on each other over time. PAR often begins with “small” cycles that address comparatively minor questions or problems before participants move on to more complex or consequential issues. PAR processes nearly always include stages of reflection, evaluation, or critical analysis, which extends to personal reflection and self-criticism—not just critical inquiry about external policies, programs, or practices. It is important to note that researchers and practitioners have developed numerous PAR models, and that different PAR models may recommend different stages or methods.

CASE EXAMPLE: Because Sample High School’s PAR data indicated that policy changes alone were unlikely to eliminate the problems surfaced during the focus-group conversations and survey, the PAR Team decided to follow a cyclical process of observation, reflection, action, evaluation, and modification. Over time, the school introduced policy modifications, a new staff training program, and alternative disciplinary practices, which resulted in a year-over-year decrease in behavioral problems and disciplinary referrals.

5. PAR empowers participants by building their knowledge, skills, confidence, or agency.

In a traditional researcher-researched relationship, the researcher is typically a highly trained professional who determines the goals of the process, how the process is conducted, and how the findings are interpreted, presented, or used. In this traditional scenario, researchers improve their skills, gain the most insights, and enhance their professional credentials—and they may also be the only individuals participating in a study who are compensated for their time.

In a PAR process, however, school, community, or organizational participants are given opportunities to acquire new skills and knowledge, and they are often compensated for their time, which can build their power, confidence, and personal sense of agency in a variety of ways. For example, participants may develop a deeper understanding of how their organization or community works, learn new skills that can be used in civic or professional settings, gain insights that help them more effectively advocate for themselves or for a cause, or acquire new information that reveals how they are being disadvantaged or exploited by existing policies or systems. Many advocates of PAR contend that the self-empowerment of stakeholders should not just be a side effect of a PAR process—it should be an explicit goal.

CASE EXAMPLE: Through their involvement in the action-research process, Sample High School’s students, teachers, and family members were able to connect disciplinary issues in the school to broader social issues related to policing, mass incarceration, racism, and poverty. Over time, the perceived source of the problem shifted: rather than focusing their disciplinary efforts on changing student behaviors, the school dedicied to enact policies and practices that countered—rather than exacerbated—broader social forces. Members of the PAR team not only gained new research, facilitation, reflection, and data-analysis skills, but they were also motivated to share what they learned during school-board meetings and community forums, which led to them acquiring new skills and confidence as advocates, presenters, and public speakers. In addition, multiple members of the PAR team decided to become more involved in their school and community, and two members decided to run for open school-board seats in the next election cycle.

6. PAR assumes that perfect neutrality and objectivity do not exist in social contexts.

Participatory action research is based on the premise that all knowledge is socially constructed, and that knowledge reflects the biases, priorities, or concerns of those who create it. Consequently, those who control how knowledge is produced or understood can exert power over those who do not participate in the creation of that knowledge. Because new knowledge or information is socially produced, it can also perpetuate harmful social behaviors such as stereotyping or discrimination. Participatory action research can therefore challenge, mitigate, or disrupt real or potential social problems by including historically marginalized, disadvantaged, silenced, or oppressed groups in production of new knowledge—knowledge that, as a result of their participation, is more likely to reflect their cultural experiences, perspectives, priorities, and concerns.

CASE EXAMPLE: During the PAR team’s focus groups, Sample High School’s administrators and educators were surprised, and occasionally even shocked, by what they learned from participants. They realized that the home lives of their students and families were far more difficult than they had assumed; that behavioral problems often began with stressful situations outside of school; that teachers didn’t have training or clear guidance on how to manage behavioral problems productively; and that many parents were looking for strategies to reduce the stress their children were experiencing inside and outside of school. School leaders began to see that policies and practices designed to control student behavior, rather than show respect and compassion, were contributing to the problem. School leaders also realized that they did not have the capacity or expertise to address some of the problems identified during the focus groups, and that they needed to enlist assistance from outside organizations and agencies.

7. PAR challenges traditional hierarchies and power dynamics.

Because a participatory action research process erodes the distinction between researcher and researched , it can challenge the assumptions or biases of researchers and leaders, just as it disrupts the traditional distinction between those who produce new knowledge and those who might either benefit from or be harmed by that knowledge. In some cases, the separation of researcher and researched can lead to a variety of negative outcomes, such as the wrong problems being studied (due to biased and flawed assumptions made by researchers), or the manipulation of research findings for the purposes of maintaining power, misrepresenting opponents, or advancing an agenda that may not be in the public interest.

Some advocates of participatory action research contend that when school, community, or organizational stakeholders are not involved in the production of new knowledge, the resulting information and interpretations are more likely to be inaccurate, misrepresented, or abused by those who control its production. In this way, PAR is often one of many strategies used to advance greater equity, justice, transparency, or accountability in programs, organizations, and public institutions such as schools. A PAR process is also intentional about acknowledging and disrupting inequalities of power among team members. For example, a PAR team might engage in an open conversation about how power and privilege affects their group’s dynamics and decisions, and about how they might structure their working partnership to ensure equity of voice, leadership, and decision-making.

CASE EXAMPLE: By giving up some degree of control over the research and decision-making process, and allowing their long-held professional assumptions to be challenged, Sample High School’s administrators not only became more informed about the problem, but they felt more motivated and empowered to address it. While the conversations were emotionally difficult for everyone involved at times, the PAR process ultimately helped administrators, teachers, students, and families learn how to be more honest and vulnerable with one another. Even though administrators felt uncomfortable and defensive at first, especially when students expressed their feelings about the school’s disciplinary policy or described their experience of being disciplined, the process resulted in a much clearer understanding of their students and families, which helped the administrative team build stronger and more meaningful relationships with their community that also led to positive changes in other school policies, programs, and practices.

Participatory Action Research and Evaluation Challenges

As with any approach to research or evaluation, participatory forms of action research and evaluation are the subject of debates and criticisms, while the efficacy or outcomes of a particular PAR or PE process are often determined by how well or poorly it’s designed and implemented.

The following descriptions illustrate some of the challenges commonly encountered by local leaders, organizers, or practitioners implementing a PAR, YPAR, or PE process:

• Participatory approaches to research and evaluation may require more time, funding, or staffing to execute than other inquiry processes, given that inclusive processes involving larger groups of people generally require more preparation, outreach, coordination, and relationship-building.
• Participatory approaches may produce a large amount of data and documentation that requires time, funding, or human capacity to analyze.
• Participants in a PAR or PE process may require training in specialized skills such as group facilitation, formal observation, or data collection.
• Schools, communities, or organizations may not have the experience, capacity, or training required to work with stakeholders in ways that are authentically democratic, collaborative, inclusive, equitable, and non-hierarchical.
• Participants may express viewpoints that are uncomfortable, controversial, or contentious, or that challenge the perspectives, privilege, and authority of those in power, which may require skilled facilitation to constructively and equitably navigate.
• Participatory approaches may require leaders, coordinators, and facilitators to interact across cultural differences such as race, nationality, ideology, language, or disability, and leaders, organizers, and practitioners may not have the training or skills in cross-cultural sensitivity and communication required to navigate cultural divides in productive ways.
• Cultural biases may implicitly or explicitly shape the design and execution of a PAR or PE process in ways that are inequitable or exclusionary, which might then silence certain viewpoints or produce misrepresentative data. Participants may not have the experience or training required to recognize when a process is biased or flawed, for example, and the use of the “PAR” or “PE” labels may inadvertently legitimize misrepresentative data or inadvisable actions that do not serve the interests of stakeholders.
• A participatory process may be manipulated by administrators, directors, managers, or others with authority and influence in a school, organization, or community. In these cases, leaders may express the desire to undertake an authentic PAR or PE process, but then subvert it in either small or significant ways to maintain control, silence viewpoints, suppress criticism (including legitimate criticism), or advance an agenda that may not be in the best interests of participants and stakeholders.
• Those in power may not see the value or benefits of participatory approaches to research and evaluation; they may become defensive or hostile about giving up control and decision-making authority; or they may not have the self-reflection or self-criticism skills required to lead or support an authentic PAR process.
• Participatory approaches may also create frustration, anger, or resentment among participants, particularly if they are led to believe their views will be heard and acted on, but leaders with power and authority decline to implement the community ideas or recommendations that result from the process.

Acknowledgments

Organizing Engagement thanks Joanna Geller of the  Parent Leadership Indicators Project  at the Metropolitan Center for Research on Equity and the Transformation of Schools for her contributions to developing and improving this introduction.

Baldwin, M. (2012). Participatory action research . In M. Grey, J. Midgley, & S.A. Webb. (Eds.), The SAGE handbook of social work . (pp. 467–482). London: Sage Publications.

Cousins, B. J., & Whitmore, E. (1998). Framing participatory evaluation . New Directions for Evaluation, 80, p. 5-23.

Danley, K.S. & Ellison, M.L. (1999). “ A handbook for participatory action researchers ” in Systems and Psychosocial Advances Research Center Publications and Presentations . Boston: Center for Psychiatric Rehabilitation Sargent College of Health and Rehabilitation Sciences at Boston University. *Illustration

McNiff, J. & Whitehead, J. (2011). All you need to know about action research . Thousand Oaks, CA: Sage. *Illustration

Reason & H. Bradbury (Eds.). (2008). The SAGE handbook of action research: Participative inquiry and practice . Thousand Oaks, CA: Sage.

Sagor, R. (2000). Guiding school improvement with action research . Alexandria, VA: Association for Supervision and Curriculum Development.

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Participatory action research.

Participatory Action Research (PAR) is an approach to enquiry which has been used since the 1940s. It involves researchers and participants working together to understand a problematic situation and change it for the better. There are many definitions of the approach, which share some common elements. PAR focuses on social change that promotes democracy and challenges inequality; is context-specific , often targeted on the needs of a particular group; is an iterative cycle of research, action and reflection; and often seeks to ‘liberate’ participants to have a greater awareness of their situation in order to take action. PAR uses a range of different methods, both qualitative and quantitative.

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Participatory Research Methods – Choice Points in the Research Process

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Participatory research (PR) encompasses research designs, methods, and frameworks that use systematic inquiry in direct collaboration with those affected by an issue being studied for the purpose of action or change. PR engages those who are not necessarily trained in research but belong to or represent the interests of the people who are the focus of the research. Researchers utilizing a PR approach often choose research methods and tools that can be conducted in a participatory, democratic manner that values genuine and meaningful participation in the research process. This article serves as an introduction to participatory research methods, including an overview of participatory research, terminology across disciplines, elements that make a research method participatory, and a model detailing the choice points that require decisions about which tools and methods will produce the desired level of participation at each stage of the research process. Intentional choices of participatory research methods, tools, and processes can help researchers to more meaningfully engage stakeholders and communities in research, which in turn has the potential to create relevant, meaningful research findings translated to action.

Participatory Research

Participatory Research (PR) is a research-to-action approach that emphasizes direct engagement of local priorities and perspectives (Cornwall & Jewkes , 1995) . PR can be defined as an umbrella term for research designs, methods, and frameworks that use systematic inquiry in direct collaboration with those affected by the issue being studied for the purpose of action or change (Cargo & Mercer , 2008) . PR prioritizes co-constructing research through partnerships between researchers and stakeholders, community members, or others with insider knowledge and lived expertise (Jagosh et al. , 2012) . Simply put, PR engages those who are not necessarily trained in research but belong to or represent the interests of the people who are the focus of the research. Instead of the “subjects” of traditional research, PR collaborates with stakeholders, community, constituents, and end-users in the research process.

By sharing leadership in research, PR “contributes directly to the flourishing of human persons, their communities, and the ecosystems of which they are part” (Reason & Torbert , 2001 , p. 6) . PR has a multitude of benefits including research that is informed by and relevant to real-world contexts, results that can be more effectively translated into community and non-academic settings, and research quality and rigor that is improved by the “integration of researchers’ theoretical and methodological expertise with nonacademic participants’ real-world knowledge and experiences into a mutually reinforcing partnership” (Balazs & Morello-Frosch , 2013; Bush et al. , 2017; Cargo & Mercer , 2008 , p. 327; International Collaboration for Participatory Health Research (ICPHR) , 2013; Warren et al. , 2018) . Increasingly, PR is used and valued across disciplines as a way to solve complex problems; however, the nomenclature of the specific PR approaches varies widely. As can be seen in Table 1 , the breadth of terms describing the PR orientation is vast, but they share in common a value in doing research with those who are typically the subjects of research, rather than on them (Reason & Torbert , 2001) . Table 1 is not intended to be an exhaustive list of the frameworks, approaches, and orientations that utilize PR, but it demonstrates that there are researchers within almost every discipline that view research as a collaborative inquiry process with research goals that go beyond knowledge generation and into real-world impact.

Over the last decade, researchers across disciplines have increasingly engaged all types of stakeholders, including consumers, end-users, patients, youth, and individuals from marginalized communities to have active roles in the research process, sharing decision-making to ensure research is relevant and translational in their lives (Vaughn et al. , 2018) . The way that these stakeholders are engaged is not conceptualized as a dichotomous distinction, but rather as a continuum ranging from academic-driven research to equitable shared decision making between academic and community partners. For example, a report from the National Institutes of Health describes community-engaged health research as a continuum with increasing involvement, impact, trust, and communication flow that ranges from outreach (i.e., researchers provide communities with information) to shared leadership (i.e., strong bidirectional partnership where final decision making is at the community level) (CTSA Community Engagement Key Function Committee Task Force on the Principles of Community Engagement , 2011) . Key and colleagues (2019) describe research engagement as ranging from community informed to community driven. Similarly, from the field of civic engagement, the Spectrum of Public Participation describes a continuum of engagement ranging from inform , in which information is provided to the public to help communities understand a complex topic, to empower , in which decisions made by stakeholders are implemented into practice (International Association of Public Participation (IAP2) , 2018) . The terms and definitions differ in these three frameworks, but the implications for PR are the same: the choice of participation level is closely tied to the impact research will have in real world settings.

Research Methods

A research method is typically thought of as a means of data collection or data generation. Conventionally, research methods are categorized as quantitative methods (i.e., surveys, questionnaires), qualitative methods (i.e., interviews, focus groups), or some combination of the two in mixed methods research. Research methods vary considerably and can include written, visual, verbal, observational, arts-based, and active strategies. Within PR, the process of engaging people in each step of the research process includes tools, tasks, and structured activities that are used to facilitate participation, shared decision-making and mutual learning. Thus, we define research methods broadly to include those concrete tools, techniques and processes used throughout the entire research process not just at the point of data collection. For instance, a particular method could be developed or adapted for use when forming a research partnership or to co-design research questions. Furthermore, research methods can include the processes and techniques for data collection, data analysis and interpretation, dissemination, and enacting change.

Participatory Research Methods

In contrast to more traditional research design strategies, researchers utilizing a PR approach often choose research methods and tools that can be conducted in a participatory, democratic manner. The foundational premise of participatory research methods is the value placed on genuine and meaningful participation – methods that offer “the ability to speak up, to participate, to experience oneself and be experienced as a person with the right to express yourself and to have the expression valued by others” (Abma et al. , 2019 , p. 127) . The ways in which stakeholders participate will vary at each step of the research process, and there are infinite options as to how to share decision making in each research task. Figure 1 depicts “choice points” – the intersection between participation and steps in the research cycle. During each and all phases of research, decisions must be made about which tools and methods will produce the desired level of participation. First, stakeholders must identify their needs and goals of the research process. Second, researchers must identify the fundamental needs of research to provide the desired evidence, outcome, or impact. Ideally, academic-community partnerships will work together to make choices that will best meet the needs of both the research and those involved in the research. These choices might lead to highly participatory strategies for some steps in the research process, and more researcher-driven strategies at others. For example, an academic-community partnership focused on environmental justice might use a citizen science approach to collect soil samples, interpret results in the context of local environments, and disseminate results back into the community. In contrast, the partnership might decide that researchers have the equipment, skills, and tools to analyze the soil samples so the data analysis stage will be conducted by the researchers. Figure 1 emphasizes a foundational principle of participatory research methods – there is no prescription for the “right” way to do PR; instead, research partners must collaborate to prioritize what’s most important and choose methods that best represent stakeholder interests and maximize the potential for real-world impact.

Two important considerations should be made when conceptualizing choice points in participatory research design, or instances where choices about level of participation must be made. First, research tools and methods can vary in the degree of participation. The “inform” level of participation is usually associated with traditional research outreach, but could be more participatory if stakeholders ask to be informed about a particular topic. Traditional focus groups often function at the “consult” level of participation described in the Figure 1, with stakeholders providing feedback that researchers consider when making their research decisions. Community Advisory Boards tend to operate on the “involve” level, with community members providing feedback throughout the research process. At the “collaborate” and “empower” levels of participation, a decision to work with non-academic co-researchers would indicate a choice of research methods, tools and processes that prioritize shared decision making and co-leadership in their very structure. For example, a project that partners directly with residents of a neighborhood and trains them to be co-researchers in a project that benefits the local community could exemplify the “collaborate” level. If these residents truly led the decision making throughout the research process, this project would be functioning at the “empower” level. Notably, the potential for immediate and sustainable impact and social change are thought to rise with increasing stakeholder participation in the research process (CTSA 2011; IAP2 2018) .

Second, although there are many methods and tools that are participatory by design, more conventional research methods used in quantitative and qualitative research like surveys and focus groups are not off the table. Rather, they can be adapted and re-thought so they are approached in a participatory way. For instance, focus groups can be co-designed, co-facilitated, and collaboratively analyzed by community co-investigators (see for example , Johnson & Martínez Guzmán , 2013; McElfish et al. , 2016) . Other research partnerships have collaboratively developed and administered surveys as part of a community needs assessment (e.g. , Goodman et al. , 2014) or worked with community co-researchers to develop questions and conduct qualitative interviews (Watson & Marciano , 2015) . The distinguishing feature of participatory research is stakeholder power in decision making and implementation; therefore, any research method or tool can be participatory if chosen and/or utilized collaboratively between academic and community partners.

Collaborative researchers have many points throughout the research process that require choices about which method will provide the desired results, in terms of both research evidence and community impact. The participatory research literature provides rich and diverse examples to help guide partnerships through these choice points. Figure 2 contains examples of participatory research methods and tools that have been used at various steps in the research process. Researchers new to participatory research might use this figure to identify examples of the type of participatory tools that can be used for various research tasks. For example, if a partnership is looking for concrete strategies to involve community members in analyzing data, they might look to Jackson’s (2008) work with marginalized women to analyze qualitative data, Main and colleagues (2012) data collection, analysis, and dissemination of health data in urban Denver neighborhoods, or Cashman and colleagues (2008) overview of four public health case studies that involved stakeholders in data analysis and interpretation. Although the results of participatory research are prolific in the literature, it can be difficult to isolate concrete descriptions of how the research was collaboratively conducted. We offer these examples as a starting point to inspire future use of participatory research methods and tools.

The focus on participatory research methods is necessary to truly actualize the dual goals of PR: knowledge production and real-world action conducted in a democratic, collaborative manner. A deliberate choice of participatory research methods can help researchers more deeply engage stakeholders and communities at each step of the research process. Such engagement allows research to benefit from the collective wisdom of both researchers and communities which in turn creates more meaningful findings translated to action. Researchers across many disciplines have a long history of working with non-academic stakeholders in PR, but the nuts-and-bolts description of how to do this work is often minimal to non-existent. Explicit description of the participatory research methods, tools, and processes along with documentation of the challenges and facilitators to implementation will strengthen PR and broaden its impact.

• Research article
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• Published: 12 December 2018

Participatory action research, mixed methods, and research teams: learning from philosophically juxtaposed methodologies for optimal research outcomes

• Marguerite C. Sendall   ORCID: orcid.org/0000-0002-1239-9173 1 ,
• Laura K. McCosker   ORCID: orcid.org/0000-0001-9107-9401 1 ,
• Alison Brodie   ORCID: orcid.org/0000-0003-2786-8152 1 ,
• Melissa Hill   ORCID: orcid.org/0000-0001-8077-0889 1 &
• Phil Crane   ORCID: orcid.org/0000-0001-9105-1089 2  

BMC Medical Research Methodology volume  18 , Article number:  167 ( 2018 ) Cite this article

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Workplace health interventions incorporating qualitative and quantitative components (mixed methods) within a Participatory Action Research approach can increase understanding of contextual issues ensuring realistic interventions which influence health behaviour. Mixed methods research teams, however, face a variety of challenges at the methodological and expertise levels when designing actions and interventions. Addressing these challenges can improve the team’s functionality and lead to higher quality health outcomes. In this paper we reflect on the data collection, implementation and data analysis phases of a mixed methods workplace health promotion project and discuss the challenges which arose within our multidisciplinary team.

This project used mixed methods within a Participatory Action Research approach to address workers’ sun safety behaviours in 14 outdoor workplaces in Queensland, Australia, and elucidate why certain measures succeeded (or failed) at the worker and management level. The project integrated qualitative methods such as policy analysis and interviews, with a range of quantitative methods – including worker surveys, ultraviolet radiation (UVR) exposure measurement, and implementation cost analyses.

The research team found the integration of qualitative and quantitative analyses within the Participatory Action Research process to be challenging and a cause of tensions. This had a negative impact on the data analysis process and reporting of results, and the complexity of qualitative analysis was not truly understood by the quantitative team. Once all researchers recognised qualitative and quantitative data would be equally beneficial to the Participatory Action Research process, methodological bias was overcome to a degree to which the team could work cooperatively.

Conclusions

Mixed methods within a Participatory Action Research approach may allow a research team to discuss, reflect and learn from each other, resulting in broadened perspectives beyond the scope of any single research methodology. However, cohesive and supportive teams take constant work and adjustment under this approach, as knowledge and understanding is gained and shared. It is important researchers are cognisant of, and learn from, potential tensions within research teams due to juxtaposed philosophies, methodologies and experiences, if the team is to function efficiently and positive outcomes are to be achieved.

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In health outcomes research, it is important to use appropriate methods to obtain the best possible data with minimal bias [ 1 ]. Previous research to improve sun safety in the workplace has predominately used quantitative methods to study improvement in sun safety behaviours [ 2 , 3 ], however, quantitative research alone does allow complex issues like sun safety behaviour to be fully understood. It offers little contextualised evidence explaining why certain sun safety interventions have or have not worked, and it cannot help identify essential elements to be included in multi-component sun safety health promotion interventions [ 2 ]. Mixed methods within a Participatory Action Research (PAR), as applied to workplace health promotion for sun safety, can provide a greater understanding which ensures realistic interventions to influence behavioural change in specific in settings [ 4 ]. However, the mixed methods approach can raise several challenges during planning, implementation and analysis stages [ 5 , 6 , 7 , 8 , 9 , 10 ].

In particular, teamwork has been identified as a key issue impacting on the potential effectiveness of mixed methods research [ 11 ]. Mixed methods teams can face a variety of challenges while designing actions and interventions at the methodological and expertise levels. Qualitative and quantitative researchers hold juxtaposed ontological or epistemological stances which make teamwork difficult or impossible [ 11 , 12 ]. To overcome potential challenges, a successful mixed methods research team requires a good understanding of the nature of the research questions and the expertise required to address them [ 13 ]. Team members must be willing to learn each other’s approach to share knowledge, build trust, and develop a common language [ 13 ].

In this paper we reflect on the data collection, implementation and data analysis phases of a mixed methods workplace health promotion project addressing sun safety behaviours in outdoor workers. We discuss the challenges which arose within our multidisciplinary team in designing and implementing intervention components, and explain how we learnt to effectively minimise or overcome these challenges.

Project description

The aim of this project was to implement a comprehensive health promotion intervention using mixed methods within a Participatory Action Research (PAR) approach to influence the sun-related attitudes and behaviours of outdoor workers in workplace settings in Queensland, Australia. Recruitment and baseline characteristics are described in detail previously [ 14 ]. Briefly, 14 workplaces were recruited. These included small and large organisations across the rural, building and construction, public and local government sectors in geographically dispersed regions of Queensland. All the organisations employed outdoor workers, defined as individuals who work outdoors for most of the day on at least 5 days per week.

Each workplace nominated a workplace representative as a champion. The champions, with other workers, were invited to participate in the development of a plan for the suite of sun-safe health promotion interventions for the workplace. These plans were referred to as Sun Protection Action Plans and were developed over time in partnership with the research team. They encompassed six domains, as appropriate to, and based on data from, each workplace: policy, structure and environment, Personal Protective Equipment (PPE), education and awareness, role modelling, and skin examinations.

Using the principles and processes of a PAR approach, mixed methods were applied concurrently throughout the development of the Action Plans and data collection stages [ 9 ]. Two preliminary tools were used to engage workers and workplaces, identify the priority given to sun safety within each organisation, and gather a policy baseline. The first was a telephone-based screening tool, comprised of quantitative and qualitative questions about workplace demographics, locations and structures and existing workplace policies and procedures related to sun safety and UVR exposure. A second, more comprehensive situational analysis tool, conducted in person with the representative in each workplace, involved the systematic collection of detailed information about existing workplace sun safety policies, procedures and strategies,

The combination of data from these tools enabled a comprehensive picture of existing sun safety strategies and culture to be developed, to inform the sun safety interventions for each workplace. As the researchers were on-site to conduct the more comprehensive situational analysis, it was prudent to integrate additional research strategies targeting workers. For example, a discussion group with outdoor workers from each site was undertaken. The discussion group was guided by PAR principles to allow the discovery of information grounded in the workers’ realities. The discussion groups involved generating ideas from workers about strategies to promote and increase sun safety practices in their workplace. The discussion was transparent, free-flowing and allowed a ‘heads together’ way of thinking. It valued the workers’ inputs, took advantage of their existing skills, knowledge and resources and stimulated ideas. In most cases, supervisors were excluded from the discussion to allow workers to speak openly. All discussions were documented and transcribed to identify key themes.

Quantitative measures employed as the project developed included 1) the distribution of ultraviolet radiation (UVR) dosimeters to workers to measure their UVR exposure across one working day, and 2) a telephone survey with a sample of the workers from each workplace, to collect information about workers’ demographics, behaviours and attitudes related to sun exposure and protection in the workplace, knowledge of workplace sun protection policy, and perception of their workplaces’ level of support for sun protection. Similar data was collected during the research evaluation stage to allow for pre and post-intervention comparisons. Additional questions about workers’ perception of changes to workplace sun safety protocols were asked.

Working with a diverse team

This project was conducted by a multidisciplinary team of quantitative and qualitative researchers with various expertise in epidemiology, public health, health promotion, health economics, and the social sciences.

The team consisted of eight researches and two professional staff. All researchers held a doctoral degree. Five researchers were quantitative experts, including the Project Lead. The three qualitative methodologists were assigned an equal number of geographically feasible and like workplaces to undertake fieldwork with a Research Assistant. The Project Office consisted of two contracted professional staff – a Project Manager and a Research Assistant. Casual professional support staff was provided when needed, for example, undertaking surveys. Six researchers were located within travelling distance of the project office. One researcher was located in another Australian city and one researcher was located in Canada. The team met once a fortnight in the planning phase, and once a month during fieldwork. Six team members attended in person and two team members attended by Skype. Most team members attended most meetings. Two team members attended meetings irregularly. Each meeting was guided by an agenda developed by the project lead.

Before the project commenced, the research team set the foundation for how they would use mixed methods within the PAR approach to address the research question. The research team needed to collectively define the meaning of mixed methods and PAR to create a common language. This was complicated by the diversity of methodological expertise and experience with PAR as a research approach. Through early discussions, the researchers learnt from each other to achieve an understanding and consensus about what data each method was collecting within the PAR process, and how this information would be useful to all relevant parties: the funding body, the health promotion community, the workers and the workplaces and the skin cancer research community. This was a healthy debate which required researchers from both methodologies to consider the scope and sequence of the research. Once all researchers recognised qualitative and quantitative data would be equally beneficial to the PAR process, methodological bias was overcome to a degree to which the team could work cooperatively.

A methods paper for use by the research team was then drafted by the project manager to outline the selected mixed methods, explain how these would be integrated, and indicate the logical sequence of PAR activities. This paper allowed the research team to conceptualise the mixed methods not as designs, but as a set of interactive parts [ 15 ]. This methods paper was crucial in guiding the research team in applying the principles and processes of PAR in the project.

Researchers were encouraged to contribute to conversations from their own methodological perspective, and make these perspectives available for discussion and debate. These shared learnings fostered respect amongst the team and enabled effective information sharing because researchers felt safe voicing concerns [ 16 ]. As respect from learning grew among the team, leadership became more collaborative and the hierarchy underpinning the team dissolved. A separate language was not created but the focus remained on understanding and learning the language used by other researchers to keep the underlying methodologies of qualitative and quantitative research clear. This process of learning was a fundamental step in facilitating the team’s effective use of the mixed methods within the PAR approach.

There was, however, tension within the research team about how best to integrate qualitative and quantitative data collection methods without exceeding the project timeline. Such tension regarding data methods integration is common in mixed methods research and is an often-cited barrier to conducting research of this type [ 5 , 9 ]. After listening, reflecting and learning it was agreed data collection had to be resilient and flexible [ 16 ], combining qualitative and quantitative methods to ensure each was not wholly dependent on the other. For example, as the team became aware of rising tensions, ‘methodology’ was tabled as an agenda item at each team meeting. This ensured there was explicit permission and opportunity for team members to ask questions and clarify concerns about underlying methodological reasoning, engage in discussion about integrating approaches and ensuring rigour. This helped avoid the added complexity of problems and potential setbacks normally associated with the interdependency of multiple methods [ 16 ] throughout the PAR process.

The team’s different approaches to mixed methods had a negative impact on the data analysis process and reporting of results. The complexity of qualitative analysis was not truly understood and recognised by the quantitative team. For example, analysis of quantitative results was prioritised to meet the final report deadline. The analysis of qualitative findings was left until the quantitative results were completed. The limited time for qualitative analysis impacted a rigorous analytical process and the opportunity to present quantitative and qualitative outcomes as a comprehensive integrated whole. Subsequently, the project’s qualitative and quantitative outcomes were reported separately in the final report [ 17 , 18 ].

A key philosophy of this project was the participatory and collaborative nature of planning between workers and each workplace and the research team. The qualitative methodologist worked directly with workplaces acting as a link to the project office. Over the 12-month intervention period, these team members developed rapport with the workplaces arriving at a deep understanding of the workplace context. This is consistent with the PAR approach. Time was taken to consider outcomes from the situational analysis tools and discussion groups, to negotiate meaning with stakeholders, to build a shared understanding of the pre-intervention data and to decide upon the most effective strategies for the workplace. This involved the research team sharing and learning from insights of existing practices and piecing together a plan which best suited individual workplaces. Throughout the intervention period, the research team met regularly to discuss fieldwork progress. This process was challenged however, because 1) some team members did not attend meetings, 2) team meetings were dominated by quantitative experts and 3) the same challenges were discussed from one meeting to the next.

The Sun Protection Action Plans were implemented and progress monitored by the research team, with all nuances, key outcomes, barriers and facilitating factors documented in a case study design. This created further discussion and learning amongst the research team. Team members were required to ‘step back’ from their own area of expertise and genuinely endeavour to understand another’s view and to situate that view within the projects. This was often difficult because not all team members had the experience of working in mixed methods teams. The team faced the challenges of being true to the PAR process by not confining the development of case studies to rigid boundaries, yet ensuring the case studies reflected consistent themes. For example, a proposed research design involved grouping workplaces to control and case. Case workplaces would be assigned a suite of interventions. This design is not viable due to the highly contextual nature of workplaces but remained on the team meetings’ agenda despite discussions. The case studies aimed to consider the voice and perspective of management (policy analysis, the relevant groups of workers (survey research) and the interaction between them. Case study development was a joint exercise between the workers and each workplace and the research team and no unresolved conflicts arose during their construction.

There is a lack of research about optimal ways for teams to function in mixed method studies [ 19 ]. A significant learning from this project which could benefit the functionality and cohesiveness of mixed methods research teams is an understanding of the importance of commencing from a platform of social inquiry and extending to a common analytical space, rather than relying on individual investigators’ philosophical assumptions. For example, there was no early discussion about the weighting of methodologies – was this a quantitative project, with some qualitative injury, or was this a qualitative project, with some quantitative inquiry? Team members may have assumed equal or unequal weighting. Either way, the integration of these analyses within the PAR process was challenging. For example, there was an unspoken but obvious positioning between the methodologies. Qualitative methodology was highly positioned within each workplace and fieldwork and quantitative methodology was highly positioned in the project office and the project our-outcomes. The analysis strategy originally involved use of qualitative data to interpret the quantitative results and then the integration and comparison of qualitative and quantitative phases at the beginning and the end of the project. As the project developed, the reporting of quantitative results was prioritised, particularly at the evaluation stage.

Lessons learnt and future challenges

Ineffective communication underpinned by a lack of a shared language or ‘methodological disrespect’ may impede successful teamwork [ 16 ]. This issue of compatibility between research philosophies arose while the project was being designed, and required the research team to listen, reflect and learn about each other’s perspectives. Although consensus was reached about the integration of quantitative and qualitative methodologies within a PAR approach, there was general learning amongst the researchers that a shift away from a preoccupation with explicit assumptive differences among paradigms, and toward other characteristics of social inquiry traditions was required. Paradigms are not universally accepted as necessary among mixed methods researchers as they can marginalise other beliefs or force researchers to adhere rigidly to a set of beliefs [ 20 ]. However, they are useful to guide inquiry, especially for novice mixed methods researchers or teams. Where paradigms are applied, they are regarded as not static, concrete entities which restrict a research process [ 21 ] but rather, a system of beliefs and practices which influence what questions are asked [ 21 ]. Moving away from qualitative or quantitative methodologies and towards those inherent in mixed methods within a PAR approach allows researchers to transition beyond the methodological binary and ‘paradigm wars’ that have characterised social science research for several decades [ 20 ].

This project subscribed most fully, though not in a contrived way, to the transformative-emancipatory paradigm as outlined by [ 22 ]. This perspective is characterised by the intentional collaboration with minority and marginalised groups to address a research problem [ 22 ]. While it was not the intention of the research team to subscribe to a paradigm, the use of action research to guide this project meant this happened incidentally. Purposeful use of a guiding paradigm may have allowed the research team to learn from one another and reach a consensus about the use of qualitative and quantitative methods earlier in the planning stages of the project.

The use of mixed methods within a PAR approach will continue to expand across disciplines and fields. It is important researchers are cognisant of, and learn from, potential tensions within research teams due to juxtaposed philosophies, methodologies and experiences. If positive outcomes are to be achieved, learning from each other for the efficient functioning of the research team is just as important as the effective integration of qualitative and quantitative research methods. Cohesive and supportive teams take constant work and adjustment as knowledge and understanding is gained and shared. Discussion of strategies to facilitate team cohesiveness in mixed methods projects is still widely unavailable in the literature.

Even though challenges were faced by our research team at every phase of the project, mixed methods within a PAR approach allowed the team to discuss, reflect and learn from each other, resulting in broadened perspectives beyond the scope of any single research methodology.

Abbreviations

Participatory action research

Personal protective equipment

Ultraviolet radiation

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Acknowledgements

This discussion paper is based on a research project which was funded by the State Government of Queensland acting through Health Promotion (QCHO/002068), Tender Offer No. 00.01/026. The funding body supported the proposed study but had no role in the study design, data collection and analysis or writing of manuscripts.

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MCS, PC and LKMC developed the original idea for this paper. MCS and LKMC, with help from MH, contributed to the acquisition, analysis and interpretation of the survey data. MCS, MH and LKMC wrote the first and successive drafts of the paper. MCS and AB made substantial revisions for publication. All authors read and approved the final manuscript.

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This study uses Participatory Action Research (PAR) as a research design. The whole research is based on a participatory approach: in collecting data, analysing data, and re-defining the research question and the research method. PAR bridges the gap between theory and practice through community-based participation. It is rooted in social psychology.

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Richter, J. (2016). Research design: Participatory Action Research (PAR). In: Human Rights Education Through Ciné Débat. Springer VS, Wiesbaden. https://doi.org/10.1007/978-3-658-12723-7_6

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Implementation research design: integrating participatory action research into randomized controlled trials

Luci k leykum.

1 VERDICT, a VA HSR&D REAP at the South Texas Veterans Health Care System, San Antonio, Texas, USA

2 Department of Medicine, School of Medicine, University of Texas Health Science Center at San Antonio, San Antonio, Texas, USA

Jacqueline A Pugh

Holly j lanham.

4 Department of Information, Risk and Operations Management, McCombs School of Business, The University of Texas at Austin, Austin, Texas, USA

Joel Harmon

3 School of Business, Fairleigh Dickinson University, Madison, New Jersey, USA

Reuben R McDaniel, Jr

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0 ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

A gap continues to exist between what is known to be effective and what is actually delivered in the usual course of medical care. The goal of implementation research is to reduce this gap. However, a tension exists between the need to obtain generalizeable knowledge through implementation trials, and the inherent differences between healthcare organizations that make standard interventional approaches less likely to succeed. The purpose of this paper is to explore the integration of participatory action research and randomized controlled trial (RCT) study designs to suggest a new approach for studying interventions in healthcare settings.

We summarize key elements of participatory action research, with particular attention to its collaborative, reflective approach. Elements of participatory action research and RCT study designs are discussed and contrasted, with a complex adaptive systems approach used to frame their integration.

The integration of participatory action research and RCT design results in a new approach that reflects not only the complex nature of healthcare organizations, but also the need to obtain generalizeable knowledge regarding the implementation process.

A gap exists between what is known to be effective and what is actually delivered in the course of usual medical care in international health systems [ 1 - 5 ]. The aim of implementation research is to reduce this gap through identifying methods to improve clinical practice in a generalizeable way. Implementation research tries to understand how an intervention designed to improve clinical practice and tested in a limited, controlled setting can be implemented across a wide range of settings. These implementation research efforts have ranged from interventions focusing on individual provider behavior, to those with a more general educational focus, to those designed to address specific barriers to change, but these efforts share in common only small to modest effects on outcomes [ 6 - 10 ].

Interventions that are multi-pronged in approach, or that target organizations rather than individuals, may be more likely to be successful [ 11 - 13 ]. However, these may also be more difficult to translate from one institution or setting to another because of inherent differences between institutions. These differences arise because healthcare organizations are not static, but are constantly adapting and evolving in response to changes in their local environments, making one-size-fits-all interventions that attempt to reduce local variation less likely to be successful.

This leads to a profound dilemma in implementation research: how do we design interventional trials that are generalizeable, but also have enough flexibility to be meaningful and more likely to be successful locally? To put this another way, how can we marry what many consider to be the ideal of the randomized controlled trial (RCT) with methods that address the difficulty of retaining interventional fidelity across institutions, and also address the more individualized, institutional needs of institutions when it comes to actually making an intervention work on a local level? The goal of this paper is to explore the integration of participatory action research (PAR) with a RCT study design as a mechanism for informing and improving our ability to translate research findings into general practice.

Why there is a need to consider different research methods in healthcare organizations

A growing literature suggests that healthcare organizations are complex adaptive systems (CAS) [ 13 - 19 ]. CAS are comprised of individuals who learn, inter-relate, and self-organize to complete tasks. They also co-evolve with their environment, responding to external forces in ways that in turn reshape their external environment. Most importantly, CAS are characterized by non-linear interactions that may lead to outputs, or 'emergent properties,' that are not entirely predictable.

Conceptualizing healthcare organizations as CAS has important implications for how we think about intervening in such systems, as the CAS framework reinforces the idea that each system is unique, and that interventions cannot easily be moved from one organization to the next with predictable results [ 13 , 17 , 20 , 21 ]. The CAS framework goes further, however, by suggesting that it is only through leveraging each system's pattern of interconnections between individuals that interventions will be optimally effective. Thus, to have the biggest impact, it is necessary to not only take into account differences between systems, but to exploit these in a way that will lead to maximal results. The implication is that the local participants will have the greatest ability to accomplish this.

The idea of performing a RCT in CAS requires us to rethink several key points about RCTs. First, the notion that a single intervention can be applied in a standardized way is not applicable. Therefore, we need to pay attention to what elements of an intervention could or should be common to all sites, and what can be varied locally. Second, the CAS framework should lead us to rethink the idea of monitoring fixed 'endpoints' at certain pre-specified points in time. Instead, we must pay attention to the implementation of an intervention throughout time, to how the intervention impacts the interdependencies within the system, and to the potentially unpredictable impacts of interventions. This requires a different level of monitoring, one that can best be done by local participants. Finally, the application of CAS to clinical systems encourages the idea that the intervention itself will evolve over time as the organization in which it is implemented changes. This may make the intervention more or less effective over time.

Thus, reconceptualizing clinical and healthcare organizations as CAS makes new approaches to implementation research necessary. A way of not only accounting for but taking advantage of local differences in healthcare systems is needed, but needs to be balanced by a research design framework that allows for some level of generalizability. The CAS nature of healthcare systems may make the PAR approach a particularly appropriate one for use in healthcare. PAR recognizes the importance of relationships, feedback loops, and the ability of participants to self-organize within a dynamic system -- three hallmarks of CAS.

Participatory action research defined

PAR is a technique derived over the last 40 years from the sociological, organizational, educational, and evaluation research literatures [ 22 - 24 ]. It is a design that partners the researcher and participants in a collaborative effort to address issues in specific systems. It is a collaborative, cyclical, reflective inquiry design that focuses on problem solving, improving work practices, and on understanding the effect of the research or intervention as part of the research process. It explicitly calls for making sense of the impact of change, and refining actions based on this impact. Essential elements and typical methods of action research are shown in Table ​ Table1 1 [ 22 - 56 ], derived from reviewing definitions of PAR across disciplines and qualitatively analyzing these definitions for themes and commonalities.

Essential elements of participatory action research

PAR has been influential in healthcare literature. Two systematic reviews of what may be considered PAR in healthcare settings are available. The UK National Health Service funded a systematic review of action research, published in 2001 [ 23 ]. 'Initiatives that persisted at the same location were found in 32 studies (54%) and, in a small number (four studies, 13%), an effect beyond their location was claimed.' In 2004, the Agency for Healthcare Research and Quality sponsored an evidence report on community-based participatory research [ 24 ]. This review found only 12 completed interventional studies, four of which were RCT's. Findings revealed modest positive health outcome findings, but the reviewers could not determine whether this benefit could be attributed to the community-based participatory research methods. Both reviews suggest the need to further understand what constitutes high-quality PAR and how best to evaluate the quality and outcomes of such research. More recently, a number of studies have been published using PAR to approach a variety of healthcare issues, including physical activity and obesity in young people [ 25 , 26 ], health disparities [ 27 ], hypertension and diabetes management [ 28 ], primary care delivery [ 29 ], and disaster planning [ 30 ].

PAR shares concepts with both action research and participatory research, but is not identical to these approaches.

Similarities and differences between PAR and quality improvement strategies

While the term 'PAR' is not widely used in clinical circles, many continuous quality improvement (CQI) techniques, such as Deming's total quality improvement, Six Sigma techniques, and the Institute for Healthcare Improvement's learning collaboratives, have features that are consistent with PAR. First, they call for involvement of a team of key individuals, particularly those with a fundamental knowledge of the context and need for improvement, to be involved in the process. Second, they call for focusing a team around a specific problem. Third, they involve a cyclical approach with repeated cycles of incremental improvement, analogous to 'plan-do-study-act.' Finally, both PAR and CQI are meant to be transformative for the individuals involved, so that they have the skills to problem solve in new scenarios.

An important difference between PAR and CQI is that the latter typically assumes a reductionist system that can be improved by looking at specific steps in healthcare processes. PAR's emphasis on the relationships between individuals in the system, and their ability to self-organize over time, implies an inherent applicability to CAS. An additional difference between PAR and CQI approaches is that the primary goal of the latter is to do an intervention, while that of the former is also to learn something about the implementation process itself.

How PAR may be integrated with randomized controlled trails in implementation research design

We propose integrating the RCT and PAR approaches to retain the 'rigor' of the RCT with the local sensibility brought by PAR. This integration informs several elements of a combined design: the intervention, the endpoints, and the process of measurement. Table ​ Table2 2 summarizes key elements of PAR and RCT, and how these specific elements may be incorporated into an integrated PAR/RCT approach.

Elements of PAR, RCT's, and integrated PAR/RCT

To integrate PAR into an RCT framework, we will need to move away from the proscribed interventions of the 'traditional' RCT in favor of locally designed interventions that meet a general goal or strategy. Elements of PAR may be important additions to intervention design in implementation research, particularly the need for local input into intervention design, and the need for sites to continue to change over the course of an intervention based on the success of the intervention. PAR may help us to focus less on the medical content of the intervention and more on the processes of group facilitation, reflection, and relationship building that may be the more generalizeable components of the intervention. These activities should be made explicit elements of an intervention to allow for the incorporation of local conditions or context into the research design.

Non-healthcare literatures suggest that participation and decisional control are facilitators of organizational learning and change, overcoming barriers such as established routines and political barriers. Participation may also facilitate learning, in turn leading to increased likelihood of longer-term changes in behavior. These attributes may also facilitate the successfully implementation of interventions to improve healthcare delivery. In a PAR/RCT approach, a 'joint' leadership structure with both a study and a site PI with local decision-making authority over choosing participants and intervention implementation may create a mixture of internal and external control that leads to more effective interventions.

There may also be benefit to integrating the ability to modify the intervention plan into the research design by building reflection into the intervention. Interventions that explicitly allow participants to reflect and respond to incremental changes in the outcome variables during the course of the intervention period may allow for adaptation of the intervention in ways that may make the intervention more effective. Creating opportunities for reflection within and across sites with a focus on sharing experiences may also allow interventions to evolve in more effective directions. These adaptations and their impact are important to understand. Rather than undermining the ability to generalize from results, a greater understanding of how local contexts and biases influence interventions may actually lead to findings that improve the ability of subsequent settings to implement the intervention. An example of such a strategy may include result feedback during specific ranges of time, such as sharing the impact of an intervention on process or patient outcomes.

To integrate PAR and RCT, new approaches to defining endpoints and their measurement will be required. In addition to the clinical endpoints that relate to the disease or population in question, endpoints chosen by local participants to help them monitor their progress should be added. Instead of pre-defined time periods at which endpoints are measured, the process of reflecting on the impact of an intervention in the clinical setting should become continuous, and the time it takes to implement an intervention may become an endpoint. This will allow for feedback that will help to strengthen the intervention, and will lead to a greater understanding of how the implementation process unfolds in each clinical setting. This understanding will be key to our ability to implement interventions successfully in other clinical settings. Thus, a greater appreciation of the process of intervention is a key lesson that must be derived from intervention studies.

An example of a PAR/RCT approach could include a multi-site study, half of which are randomized to an organizational intervention. The study team would partner with members of each intervention site to identify local barriers and create strategies to implement the intervention in a way that is deemed most effective by site participants. The intervention itself could include cyclical reflection exercises in which each site reviews results and modifies the intervention based on the results. In addition to these site-specific reflections, the intervention may also include times for all intervention sites to transfer ideas across sites. The timing of these reflective cycles and the timing of endpoint measurement could be modified based on these discussions. As part of the analysis of the results of the study, the themes of the reflections would be analyzed. An examination of any changes that might have occurred in control sites as a result of study participation would also be performed.

Why including PAR may improve our ability to design more effective interventions and improve patient outcomes

At first glance, the suggestion to integrate RCT and PAR approaches may seem contradictory -- the former attempts to implement standardized interventions in an effort to reduce bias and increase generalizeability, while the latter is concerned with an individual system and its unique needs, rejecting the idea of the 'external researcher'. However, implementation research always occurs in the context of an organization, and for our efforts to become successful, new methodologies and approaches that recognize and respect each organization's unique characteristics, but still allow for a more universal understanding to be gained, must be developed. Rather than using standardized approaches to reduce bias, being explicit about differences and their impacts that will allow us to better understand the process of implementation, and it is this understanding that will lead to more successful implementation strategies. We suggest that an approach that builds on and integrates the RCT and PAR characteristics is more likely to advance our efforts than either approach alone.

The addition of elements of PAR to interventional research studies may be a way to better meet the needs of implementation research -- to meet the needs of generalizability while respecting local conditions that are important in individual healthcare settings. Additionally, these elements are well-suited to specific aspects of healthcare systems that reflect their complexity -- the role of relationships among healthcare workers, managers, and patients in potentially unpredictable settings. Incorporating PAR principles may provide us with a deeper understanding of healthcare systems and what is needed to improve them, as well as a better theoretical understanding of interventions and why they might be more or less effective in certain contexts. The results of implementation studies utilizing a practice facilitation approach suggests support for this approach, as practice facilitation focuses on improving relationships and communication within healthcare organizations.

Additionally, the explicit inclusion of reflection and 'sense making' is an important component of the PAR methodology that is critical for understanding CAS, where unanticipated or unexpected results of interventions may occur. The process of looking critically at the impact of an intervention and adapting to this impact may lead to more effective interventions. The application of sense making to organizations outside of healthcare supports this idea.

The approach of adapting elements of PAR to RCTs may seem problematic to both the strict adherents of both PAR, and to those of RCTs. For the former, the attempt to fit an approach that is meant to focus exclusively on the needs of participants into an intervention that is on some level superimposed may seem to negate the very principles of PAR. For the latter, the incorporation of this degree of latitude into an intervention may seem to nullify the purpose of performing an RCT, and the ability to generalize from its results.

We believe that these criticisms miss an essential point of this approach -- that organizations are dynamic, and that a greater understanding of the diverse processes through which general strategies may be implemented successfully is critical to implementation research. The question is not whether a diabetes registry or a clinical reminder applied in a specific way can lead to predictably improved outcomes for diabetic patients in six months; the question is whether these approaches applied uniquely in the contexts of individual healthcare systems are more likely to change these systems in sustained ways that will lead to improved outcomes. A key issue is whether an intervention is more or less likely to help to change the interconnections between elements of the system in a way that will lead to improved care. We can gain an understanding of whether certain types of interventions can be utilized in a manner across individual clinical systems such that outcomes are likely to improve. Instead of focusing on whether interventions are faithfully applied, we can learn from the myriad ways that participants apply interventions in their own settings, and from the degrees of change in outcomes that result.

Incorporating PAR principles may make the task of interpreting results of implementation trials more challenging, as it may be more difficult to assess true improvement in the setting of evolving interventions in organizations over time. However, they may also make interventions better suited to long-term successes by enabling us to implement more lasting organizational changes through the adaptive participation of those individuals who are most involved in the local process of care.

Competing interests

The authors declare that they have no competing interests.

Authors' contributions

JAP conceived the manuscript, conducted the initial review of studies of participatory action research, and completed the first draft of the manuscript. LL performed additional literature review, contributed to the first draft of the manuscript, and completed significant revision as part of the peer-review process. HL performed additional literature review, contributed to the application of the CAS framework, and contributed to the revision of the manuscript. JH contributed to the conceptualization and first draft of the manuscript. RRM contributed to the initial development of the manuscript, the application of the CAS framework, and the revision of the manuscript. All authors read and approved the final manuscript.

Acknowledgements

The research reported here was supported by the US Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service (grants REA 05-129, IMA 04-734, and RCD 04-297). The views expressed in this article are those of the authors and do not necessarily reflect the position of policy of the Department of Veterans Affairs. The authors would like to acknowledge the assistance of Carla Pezzia in the development of this manuscript.

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• Open access
• Published: 23 October 2009

Implementation research design: integrating participatory action research into randomized controlled trials

• Luci K Leykum 1 , 2 ,
• Jacqueline A Pugh 1 , 2 ,
• Holly J Lanham 4 ,
• Joel Harmon 3 &
• Reuben R McDaniel Jr 4  

Implementation Science volume  4 , Article number:  69 ( 2009 ) Cite this article

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A gap continues to exist between what is known to be effective and what is actually delivered in the usual course of medical care. The goal of implementation research is to reduce this gap. However, a tension exists between the need to obtain generalizeable knowledge through implementation trials, and the inherent differences between healthcare organizations that make standard interventional approaches less likely to succeed. The purpose of this paper is to explore the integration of participatory action research and randomized controlled trial (RCT) study designs to suggest a new approach for studying interventions in healthcare settings.

We summarize key elements of participatory action research, with particular attention to its collaborative, reflective approach. Elements of participatory action research and RCT study designs are discussed and contrasted, with a complex adaptive systems approach used to frame their integration.

The integration of participatory action research and RCT design results in a new approach that reflects not only the complex nature of healthcare organizations, but also the need to obtain generalizeable knowledge regarding the implementation process.

Peer Review reports

A gap exists between what is known to be effective and what is actually delivered in the course of usual medical care in international health systems [ 1 – 5 ]. The aim of implementation research is to reduce this gap through identifying methods to improve clinical practice in a generalizeable way. Implementation research tries to understand how an intervention designed to improve clinical practice and tested in a limited, controlled setting can be implemented across a wide range of settings. These implementation research efforts have ranged from interventions focusing on individual provider behavior, to those with a more general educational focus, to those designed to address specific barriers to change, but these efforts share in common only small to modest effects on outcomes [ 6 – 10 ].

Interventions that are multi-pronged in approach, or that target organizations rather than individuals, may be more likely to be successful [ 11 – 13 ]. However, these may also be more difficult to translate from one institution or setting to another because of inherent differences between institutions. These differences arise because healthcare organizations are not static, but are constantly adapting and evolving in response to changes in their local environments, making one-size-fits-all interventions that attempt to reduce local variation less likely to be successful.

This leads to a profound dilemma in implementation research: how do we design interventional trials that are generalizeable, but also have enough flexibility to be meaningful and more likely to be successful locally? To put this another way, how can we marry what many consider to be the ideal of the randomized controlled trial (RCT) with methods that address the difficulty of retaining interventional fidelity across institutions, and also address the more individualized, institutional needs of institutions when it comes to actually making an intervention work on a local level? The goal of this paper is to explore the integration of participatory action research (PAR) with a RCT study design as a mechanism for informing and improving our ability to translate research findings into general practice.

Why there is a need to consider different research methods in healthcare organizations

A growing literature suggests that healthcare organizations are complex adaptive systems (CAS) [ 13 – 19 ]. CAS are comprised of individuals who learn, inter-relate, and self-organize to complete tasks. They also co-evolve with their environment, responding to external forces in ways that in turn reshape their external environment. Most importantly, CAS are characterized by non-linear interactions that may lead to outputs, or 'emergent properties,' that are not entirely predictable.

Conceptualizing healthcare organizations as CAS has important implications for how we think about intervening in such systems, as the CAS framework reinforces the idea that each system is unique, and that interventions cannot easily be moved from one organization to the next with predictable results [ 13 , 17 , 20 , 21 ]. The CAS framework goes further, however, by suggesting that it is only through leveraging each system's pattern of interconnections between individuals that interventions will be optimally effective. Thus, to have the biggest impact, it is necessary to not only take into account differences between systems, but to exploit these in a way that will lead to maximal results. The implication is that the local participants will have the greatest ability to accomplish this.

The idea of performing a RCT in CAS requires us to rethink several key points about RCTs. First, the notion that a single intervention can be applied in a standardized way is not applicable. Therefore, we need to pay attention to what elements of an intervention could or should be common to all sites, and what can be varied locally. Second, the CAS framework should lead us to rethink the idea of monitoring fixed 'endpoints' at certain pre-specified points in time. Instead, we must pay attention to the implementation of an intervention throughout time, to how the intervention impacts the interdependencies within the system, and to the potentially unpredictable impacts of interventions. This requires a different level of monitoring, one that can best be done by local participants. Finally, the application of CAS to clinical systems encourages the idea that the intervention itself will evolve over time as the organization in which it is implemented changes. This may make the intervention more or less effective over time.

Thus, reconceptualizing clinical and healthcare organizations as CAS makes new approaches to implementation research necessary. A way of not only accounting for but taking advantage of local differences in healthcare systems is needed, but needs to be balanced by a research design framework that allows for some level of generalizability. The CAS nature of healthcare systems may make the PAR approach a particularly appropriate one for use in healthcare. PAR recognizes the importance of relationships, feedback loops, and the ability of participants to self-organize within a dynamic system -- three hallmarks of CAS.

Participatory action research defined

PAR is a technique derived over the last 40 years from the sociological, organizational, educational, and evaluation research literatures [ 22 – 24 ]. It is a design that partners the researcher and participants in a collaborative effort to address issues in specific systems. It is a collaborative, cyclical, reflective inquiry design that focuses on problem solving, improving work practices, and on understanding the effect of the research or intervention as part of the research process. It explicitly calls for making sense of the impact of change, and refining actions based on this impact. Essential elements and typical methods of action research are shown in Table 1 [ 22 – 56 ], derived from reviewing definitions of PAR across disciplines and qualitatively analyzing these definitions for themes and commonalities.

PAR has been influential in healthcare literature. Two systematic reviews of what may be considered PAR in healthcare settings are available. The UK National Health Service funded a systematic review of action research, published in 2001 [ 23 ]. 'Initiatives that persisted at the same location were found in 32 studies (54%) and, in a small number (four studies, 13%), an effect beyond their location was claimed.' In 2004, the Agency for Healthcare Research and Quality sponsored an evidence report on community-based participatory research [ 24 ]. This review found only 12 completed interventional studies, four of which were RCT's. Findings revealed modest positive health outcome findings, but the reviewers could not determine whether this benefit could be attributed to the community-based participatory research methods. Both reviews suggest the need to further understand what constitutes high-quality PAR and how best to evaluate the quality and outcomes of such research. More recently, a number of studies have been published using PAR to approach a variety of healthcare issues, including physical activity and obesity in young people [ 25 , 26 ], health disparities [ 27 ], hypertension and diabetes management [ 28 ], primary care delivery [ 29 ], and disaster planning [ 30 ].

PAR shares concepts with both action research and participatory research, but is not identical to these approaches.

Similarities and differences between PAR and quality improvement strategies

While the term 'PAR' is not widely used in clinical circles, many continuous quality improvement (CQI) techniques, such as Deming's total quality improvement, Six Sigma techniques, and the Institute for Healthcare Improvement's learning collaboratives, have features that are consistent with PAR. First, they call for involvement of a team of key individuals, particularly those with a fundamental knowledge of the context and need for improvement, to be involved in the process. Second, they call for focusing a team around a specific problem. Third, they involve a cyclical approach with repeated cycles of incremental improvement, analogous to 'plan-do-study-act.' Finally, both PAR and CQI are meant to be transformative for the individuals involved, so that they have the skills to problem solve in new scenarios.

An important difference between PAR and CQI is that the latter typically assumes a reductionist system that can be improved by looking at specific steps in healthcare processes. PAR's emphasis on the relationships between individuals in the system, and their ability to self-organize over time, implies an inherent applicability to CAS. An additional difference between PAR and CQI approaches is that the primary goal of the latter is to do an intervention, while that of the former is also to learn something about the implementation process itself.

How PAR may be integrated with randomized controlled trails in implementation research design

We propose integrating the RCT and PAR approaches to retain the 'rigor' of the RCT with the local sensibility brought by PAR. This integration informs several elements of a combined design: the intervention, the endpoints, and the process of measurement. Table 2 summarizes key elements of PAR and RCT, and how these specific elements may be incorporated into an integrated PAR/RCT approach.

To integrate PAR into an RCT framework, we will need to move away from the proscribed interventions of the 'traditional' RCT in favor of locally designed interventions that meet a general goal or strategy. Elements of PAR may be important additions to intervention design in implementation research, particularly the need for local input into intervention design, and the need for sites to continue to change over the course of an intervention based on the success of the intervention. PAR may help us to focus less on the medical content of the intervention and more on the processes of group facilitation, reflection, and relationship building that may be the more generalizeable components of the intervention. These activities should be made explicit elements of an intervention to allow for the incorporation of local conditions or context into the research design.

Non-healthcare literatures suggest that participation and decisional control are facilitators of organizational learning and change, overcoming barriers such as established routines and political barriers. Participation may also facilitate learning, in turn leading to increased likelihood of longer-term changes in behavior. These attributes may also facilitate the successfully implementation of interventions to improve healthcare delivery. In a PAR/RCT approach, a 'joint' leadership structure with both a study and a site PI with local decision-making authority over choosing participants and intervention implementation may create a mixture of internal and external control that leads to more effective interventions.

There may also be benefit to integrating the ability to modify the intervention plan into the research design by building reflection into the intervention. Interventions that explicitly allow participants to reflect and respond to incremental changes in the outcome variables during the course of the intervention period may allow for adaptation of the intervention in ways that may make the intervention more effective. Creating opportunities for reflection within and across sites with a focus on sharing experiences may also allow interventions to evolve in more effective directions. These adaptations and their impact are important to understand. Rather than undermining the ability to generalize from results, a greater understanding of how local contexts and biases influence interventions may actually lead to findings that improve the ability of subsequent settings to implement the intervention. An example of such a strategy may include result feedback during specific ranges of time, such as sharing the impact of an intervention on process or patient outcomes.

To integrate PAR and RCT, new approaches to defining endpoints and their measurement will be required. In addition to the clinical endpoints that relate to the disease or population in question, endpoints chosen by local participants to help them monitor their progress should be added. Instead of pre-defined time periods at which endpoints are measured, the process of reflecting on the impact of an intervention in the clinical setting should become continuous, and the time it takes to implement an intervention may become an endpoint. This will allow for feedback that will help to strengthen the intervention, and will lead to a greater understanding of how the implementation process unfolds in each clinical setting. This understanding will be key to our ability to implement interventions successfully in other clinical settings. Thus, a greater appreciation of the process of intervention is a key lesson that must be derived from intervention studies.

An example of a PAR/RCT approach could include a multi-site study, half of which are randomized to an organizational intervention. The study team would partner with members of each intervention site to identify local barriers and create strategies to implement the intervention in a way that is deemed most effective by site participants. The intervention itself could include cyclical reflection exercises in which each site reviews results and modifies the intervention based on the results. In addition to these site-specific reflections, the intervention may also include times for all intervention sites to transfer ideas across sites. The timing of these reflective cycles and the timing of endpoint measurement could be modified based on these discussions. As part of the analysis of the results of the study, the themes of the reflections would be analyzed. An examination of any changes that might have occurred in control sites as a result of study participation would also be performed.

Why including PAR may improve our ability to design more effective interventions and improve patient outcomes

At first glance, the suggestion to integrate RCT and PAR approaches may seem contradictory -- the former attempts to implement standardized interventions in an effort to reduce bias and increase generalizeability, while the latter is concerned with an individual system and its unique needs, rejecting the idea of the 'external researcher'. However, implementation research always occurs in the context of an organization, and for our efforts to become successful, new methodologies and approaches that recognize and respect each organization's unique characteristics, but still allow for a more universal understanding to be gained, must be developed. Rather than using standardized approaches to reduce bias, being explicit about differences and their impacts that will allow us to better understand the process of implementation, and it is this understanding that will lead to more successful implementation strategies. We suggest that an approach that builds on and integrates the RCT and PAR characteristics is more likely to advance our efforts than either approach alone.

The addition of elements of PAR to interventional research studies may be a way to better meet the needs of implementation research -- to meet the needs of generalizability while respecting local conditions that are important in individual healthcare settings. Additionally, these elements are well-suited to specific aspects of healthcare systems that reflect their complexity -- the role of relationships among healthcare workers, managers, and patients in potentially unpredictable settings. Incorporating PAR principles may provide us with a deeper understanding of healthcare systems and what is needed to improve them, as well as a better theoretical understanding of interventions and why they might be more or less effective in certain contexts. The results of implementation studies utilizing a practice facilitation approach suggests support for this approach, as practice facilitation focuses on improving relationships and communication within healthcare organizations.

Additionally, the explicit inclusion of reflection and 'sense making' is an important component of the PAR methodology that is critical for understanding CAS, where unanticipated or unexpected results of interventions may occur. The process of looking critically at the impact of an intervention and adapting to this impact may lead to more effective interventions. The application of sense making to organizations outside of healthcare supports this idea.

The approach of adapting elements of PAR to RCTs may seem problematic to both the strict adherents of both PAR, and to those of RCTs. For the former, the attempt to fit an approach that is meant to focus exclusively on the needs of participants into an intervention that is on some level superimposed may seem to negate the very principles of PAR. For the latter, the incorporation of this degree of latitude into an intervention may seem to nullify the purpose of performing an RCT, and the ability to generalize from its results.

We believe that these criticisms miss an essential point of this approach -- that organizations are dynamic, and that a greater understanding of the diverse processes through which general strategies may be implemented successfully is critical to implementation research. The question is not whether a diabetes registry or a clinical reminder applied in a specific way can lead to predictably improved outcomes for diabetic patients in six months; the question is whether these approaches applied uniquely in the contexts of individual healthcare systems are more likely to change these systems in sustained ways that will lead to improved outcomes. A key issue is whether an intervention is more or less likely to help to change the interconnections between elements of the system in a way that will lead to improved care. We can gain an understanding of whether certain types of interventions can be utilized in a manner across individual clinical systems such that outcomes are likely to improve. Instead of focusing on whether interventions are faithfully applied, we can learn from the myriad ways that participants apply interventions in their own settings, and from the degrees of change in outcomes that result.

Incorporating PAR principles may make the task of interpreting results of implementation trials more challenging, as it may be more difficult to assess true improvement in the setting of evolving interventions in organizations over time. However, they may also make interventions better suited to long-term successes by enabling us to implement more lasting organizational changes through the adaptive participation of those individuals who are most involved in the local process of care.

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Acknowledgements

The research reported here was supported by the US Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service (grants REA 05-129, IMA 04-734, and RCD 04-297). The views expressed in this article are those of the authors and do not necessarily reflect the position of policy of the Department of Veterans Affairs. The authors would like to acknowledge the assistance of Carla Pezzia in the development of this manuscript.

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JAP conceived the manuscript, conducted the initial review of studies of participatory action research, and completed the first draft of the manuscript. LL performed additional literature review, contributed to the first draft of the manuscript, and completed significant revision as part of the peer-review process. HL performed additional literature review, contributed to the application of the CAS framework, and contributed to the revision of the manuscript. JH contributed to the conceptualization and first draft of the manuscript. RRM contributed to the initial development of the manuscript, the application of the CAS framework, and the revision of the manuscript. All authors read and approved the final manuscript.

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Leykum, L.K., Pugh, J.A., Lanham, H.J. et al. Implementation research design: integrating participatory action research into randomized controlled trials. Implementation Sci 4 , 69 (2009). https://doi.org/10.1186/1748-5908-4-69

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Community-based participatory-research through co-design: supporting collaboration from all sides of disability

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As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the ‘why’ of using co-design is well understood, there is limited literature on ‘ how ’ to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices.

A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing.

The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers’ perspective and the researcher’s and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings.

Conclusions

The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Plain language summary

Making better services with communities (called co-design) and doing research with communities (e.g. community-based participatory research) are ways to include people with lived experience in developing and improving the services they use. Academic evidence shows why co-design is valuable, and co-design is increasing in popularity. However, there needs to be more information on how to do co-design. This article describes the process of doing co-design to make telepractice better with a group of lived experience experts and staff at a disability organisation. The co-design process was co-facilitated by two researchers – one with a health background and one with lived experience of disability. Telepractice provides clinical services (such as physiotherapy or nursing) using video calls and other digital technology. The co-design team did five workshops and then reflected on the success of those workshops. Based on the groups’ feedback, the article describes what worked and what was hard according to the co-designers and from the perspective of the researchers and the disability organisation. Topics discussed include the challenge of balancing ideas with realistic expectations, the value of small groups, accessibility and choice opportunities and learning new skills and insights. The research and organisational topics include the need to take time and how that doesn’t fit neatly with academic and business schedules, how the messiness of co-design can clash with approval processes, and different ways of telling people about the project that are more inclusive than traditional research. The authors conclude that co-design and community-based participatory research go well together in including people with lived experience in re-designing services they use.

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Introduction

Co-design has the potential to positively impact co-designers and their community, researchers, and organisations. Co-design is defined as designing with, not for, people [ 1 ] and can reinvigorate business-as-usual processes, leading to new ideas in industry, community and academia. As co-design and community-based participatory research gain traction, the challenges and benefits of collaborative research between people with lived experience and organisations must be considered [ 2 ].

Disability and healthcare providers previously made decisions for individuals as passive targets of an intervention [ 3 ]. By contrast, the involvement of consumers in their care [ 4 ] has been included as part of accreditation processes [ 4 ] and shown to improve outcomes and satisfaction. For research to sufficiently translate into practice, consumers and providers should be involved actively, not passively [ 4 , 5 ].

Approaches such as community-based participatory research promote “a collaborative approach that equitably involves community members, organisational representatives and researchers in all aspects of the research process” [ 6 ] (page 1). This approach originated in public health research and claims to empower all participants to have a stake in project success, facilitating a more active integration of research into practice and decreasing the knowledge to practice gap 6 . Patient and public involvement (PPI) increases the probability that research focus, community priorities and clinical problems align, which is increasingly demanded by research funders and health systems [ 7 ].

As community-based participatory research is an overarching approach to conducting research, it requires a complementary method, such as co-production, to achieve its aims. Co-production has been attributed to the work of Ostrom et al. [ 8 ], with the term co-design falling under the co-production umbrella. However, co-design can be traced back to the participatory design movement [ 9 ]. The term co-production in the context of this article includes co-planning, co-discovery, co-design, co-delivery, and co-evaluation [ 10 ]. Within this framework, the concept of co-design delineates the collaborative process of discovery, creating, ideating and prototyping to design or redesign an output [ 11 ]. The four principles of co-design, as per McKercher [ 1 ], are sharing power, prioritising relationships, using participatory means and building capacity [ 1 ]. This specific method of co-design [ 1 ] has been used across multiple social and healthcare publications [ 10 , 12 , 13 , 14 ].

A systematic review by Ramos et al. [ 15 ] describes the benefits of co-design in a community-based participatory-research approach, including improved quality and more satisfactory services. However, as identified by Rahman et al. [ 16 ], the ‘ why ’ is well known, but there is limited knowledge of ‘ how ’ to co-design. Multiple articles provide high-level descriptions of workshops or briefly mention the co-design process [ 13 , 17 , 18 , 19 ]. Pearce et al. [ 5 ] include an in-depth table of activities across an entire co-creation process, however within each part i.e., co-design, limited descriptions were included. A recent publication by Marwaa et al. [ 20 ] provides an in-depth description of two workshops focused on product development, and Tariq et al. [ 21 ] provides details of the process of co-designing a research agenda. Davis et al. [ 11 ] discuss co-design workshop delivery strategies summarised across multiple studies without articulating the process from start to finish. Finally, Abimbola et al. [ 22 ] provided the most comprehensive description of a co-design process, including a timeline of events and activities; however, this project only involved clinical staff and did not include community-based participation.

As “We know the why, but we need to know the how-to” [ 16 ] (page 2), of co-design, our primary aim was to describe the application of co-design from start to finish within a specific case study. Our secondary aim was to reflect on the challenges and benefits created by specific process design choices and to provide recommendations for future applications of co-design.

Overview of telepractice project

The case study, a telepractice redesign project, was based at Rocky Bay, a disability support service provider in Perth, Australia [ 23 ]. The project aimed to understand the strengths and pain points of telepractice within Rocky Bay. We expanded this to include telepractice in the wider Australian disability sector. The project also aimed to establish potential improvements to increase the uptake and sustainability of Rocky Bay’s telepractice service into the future. Rocky Bay predominantly serves people under the Australian National Disability Insurance Scheme (NDIS) [ 24 ] by providing a variety of services, including allied health (e.g. physiotherapy, dietetics, speech pathology, etc.), nursing care (including continence and wound care), behaviour support and support coordination [ 23 ]—Rocky Bay services metropolitan Perth and regional Western Australia [ 23 ].

The first author, CB, predominantly conducted this research through an embedded researcher model [ 25 ] between Curtin University and Rocky Bay. An embedded researcher has been defined as “those who work inside host organisations as members of staff while also maintaining an affiliation with an academic institution” [ 25 ] (page 1). They had some prior contextual understanding which stemmed from being a physiotherapist who had previously delivered telehealth in an acute health setting. A peer researcher, WSJ, with lived experience of disability, worked alongside CB. They had no previous experience in research or co-design, this was their first paid employment and they had an interest in digital technology. Peer Researcher is a broad term describing the inclusion of a priority group or social network member as part of the research team to enhance the depth of understanding of the communities to which they belong [ 26 ]. Including a peer researcher in the team promoted equity, collective ownership, and better framing of the research findings to assist with connecting with people with lived experience. These outcomes align with key components of community-based participatory research and co-design [ 27 , 28 , 29 , 30 ].

Person-first language was used as the preference of experts with lived experience who contributed to this research to respect and affirm their identity. However, we respect the right to choose and the potential for others to prefer identity-first language [ 31 ].

A summary of the structure of the phases completed before co-design workshops are represented in Fig.  1 below. Ethical approval for the project was received iteratively before each phase on the timeline (Fig.  1 ) from the Curtin Human Research Ethics Committee (HRE2021-0731). The reporting of this article has been completed in line with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist [ 7 ].

Summary of telepractice co-design project structure [ 1 ]

Here, we present an outline of the chosen research methods with descriptions of each process design choice and supporting reasons and examples specific to the study. The format is in chronological order, with further details of each step provided in Appendix 1 (Supplementary Material 1).

Methods and results

Process of co-production and preparation for co-design.

Co-production was chosen as the planning method for the study, as the inclusion of community members (Rocky Bay Lived experience experts and Staff) in each step of the research process would increase buy-in and make the research more likely to meet their needs [ 5 ]. An example of co-planning (part of co-production) includes the study steering committee, with a lived experience expert, clinician and project sponsor representatives collaborating on the selection of study aim, methods and recruitment processes. Another example of co-planning, co-design, and co-delivery was recruiting a peer researcher with disability, who worked with the embedded researcher throughout the study design and delivery.

The second process design choice was to attempt to build safe enough conditions for community participation, as people who feel unsafe or unwelcome are less likely to be able to participate fully in the research [ 1 ]. Building conditions for safety was applied by repeatedly acknowledging power imbalances, holding space for community input, and anticipating and offering accessibility adjustments without judgment.

Getting started

Understanding and synthesising what is already known about telepractice experiences and learning from lived experience was prioritised as the first step in the process. We paired a scoping review of the literature with scoping the lived experiences of the community [ 32 ]. Our reasoning was to understand whether the findings aligned and, secondly, to learn what had already been done and to ask what was next, rather than starting from the beginning [ 1 ]. Examples of strategies used in this step included interviewing clinicians and service provider Managers across Australia to establish how they implemented telepractice during the pandemic and understand their views of what worked and what did not. The second learning process occurred onsite at Rocky Bay, with people with lived experience, clinicians and other support staff, whom the embedded researcher and peer researcher interviewed to understand experiences of telepractice at Rocky Bay.

The authors presented the interview findings during focus groups with Rocky Bay participants to share the learnings and confirm we had understood them correctly. The groups were divided into staff and lived experience cohorts, allowing for peer discussions and sharing of common experiences. This helped build relationships and a sense of familiarity moving into the workshop series.

Co-design workshops

This section outlines specific components of the co-design workshop preparation before describing each of the five workshops and the final reflection session.

Staff and community co-designers

Two process design choices were implemented to form the co-design group. The first was to prioritise lived experience input as there are generally fewer opportunities for lived experience leadership in service design [ 16 ], and because the disability community have demanded they be included where the focus impacts them [ 33 ]. To acknowledge the asymmetry of power between community members, people with lived experience of disability and professionals, we ensured the co-design group had at least the same number of lived experience experts as staff.

The second priority for the co-design group was to include people for whom involvement can be difficult to access (e.g. people who are isolated for health reasons and cannot attend in-person sessions, people who live in supported accommodation, part-time staff, and people navigating the dual-role of staff member while disclosing lived experience). It was important to learn from perspectives not commonly heard from and support equity of access for participants [ 4 ].

Workshop series structure

When structuring the workshop series, lived experience co-designers nominated meeting times outside standard work hours to reduce the impact of co-design on work commitments and loss of income while participating. The workshops were designed to be delivered as a hybrid of in-person and online to give co-designers a choice on how they wanted to interact. The workshops were designed as a series of five sequential 90-minute workshops, where co-designers voted for the first workshop to be predominantly in-person and the remainder of the workshops online. Some co-designers chose to attend the initial session in person to build rapport. However, the virtual option remained available. The subsequent online sessions reduced the travel burden on co-designers, which the co-designers prioritised over further face-to-face meetings.

Workshop facilitators

To maintain familiarity and ensure predictability for co-designers, the workshops were co-facilitated by the embedded researcher and peer researcher. The co-facilitators built on relationships formed through previous interactions (interviews and focus groups), and each facilitator represented part of the co-designer group as a clinician or a person with disability. An extra support person was tasked with supporting the co-designers with disability to break down tasks and increase the accessibility of activities. The reason for selecting the support person was that they could contribute their skills as a school teacher to support the communication and completion of activities, and they had no previous experience with disability services to influence the co-designers opinions. This role was adapted from the provocateur role described by McKercher [ 1 ].

Pre-workshop preparations

To prepare for the workshops, each co-designer was asked to complete a brief survey to ensure the co-facilitators understood co-designers collect preferences and needs ahead of the session to enable preparation and make accommodations. The survey included pronouns, accessibility needs and refreshment preferences. Following the survey, the co-facilitators distributed a welcome video; the peer researcher, a familiar person, was videoed explaining what to expect, what not to expect and expected behaviours for the group to support a safe environment [ 1 ]. This process design choice was made to allow co-designers to alleviate any potential anxieties due to not having enough information and to increase predictability.

Workshop resources and supports

As the first workshop was in-person, specific process choices were made to ensure co-designers felt welcome and to uphold the dignity of co-designers with lived experience [ 34 ]. Examples of process design choices include facilitating transport and parking requests, providing easy access to the building and room, making a sensory breakout room available and having the peer researcher waiting at the entrance to welcome and guide people to the workshop room.

After reaching the workshop room, all co-designers received an individualised resource pack to equalise access to workshop materials, aiming again to balance power in a non-discriminatory way [ 11 ]. The resource pack included name tags with pronouns, individualised refreshments, a fidget toy [ 35 ] whiteboard markers and a human bingo activity described in a later section. An easy-to-apply name tag design was selected after consulting a co-designer with an upper limb difference. Further details on the resource packs are included in Appendix 1 (Supplementary Material 1).

Enabling different kinds of participation

We provided non-verbal response cards to each co-designer as communication preferences vary significantly within the disability community. The cards were intended to benefit any co-designer who struggled to use the response buttons on MS teams. The co-facilitators co-created the Yes, No, and In-the-middle response cards (Fig.  2 ) and were guided by recommendations by Schwartz and Kramer [ 29 ]. They found that people with intellectual disability were more likely to respond “yes” if the negative option included a frowning face or red-coloured images, as choosing these types of alternatives was perceived as being negative or would cause offence [ 29 ].

Non-verbal response cards

A summary of the structure and purpose of each of the five workshops is shown in Fig.  3 , followed by a more in-depth discussion of the strategies employed in each workshop.

Outline of workshop and group structures

Workshop 1: the beginning

Human Bingo was the first workshop activity, as it aimed to support relationship building in an inclusive way for both in-person and online attendees. The activity asked each co-designer to place a name in each worksheet box of someone who fit the described characteristic of that square(for example, someone who likes cooking). To include the two online attendees, laptops were set up with individual videocall streams and noise cancelling headphones enabling the online co-designers to interact one-on-one with others during the activities.

The second activity used The Real Deal cards by Peak Learning [ 36 ] to ask the co-designers to sort cards to prioritise the top five experiences and feelings they would want in a future version of telepractice. This activity aimed to set initial priorities for the redesign of telepractice [ 1 ]. Small groups with a mix of lived experience experts and staff were tasked with negotiating and collaborating to produce their top five desired experiences and feelings for future service success.

A follow-up email was sent after the session to thank co-designers, provide closure, invite feedback and let co-designers know what to expect from the next session.

Workshop 2: mapping the journey

In the second workshop, held online, the co-facilitators explained the journey mapping process and showed a draft of how the visual representation would likely look (Fig.  4 ). As the first step, co-designers were tasked with completing a series of activities to analyse lived experience interview data on the current experience of telepractice for lived experience experts. Small mixed groups were created, prioritising the needs of the lived experience experts to have staff who would be the best fit in supporting them to work through the task [ 1 ]. The small groups were allocated interview quotes corresponding to the steps of a customer journey through telepractice and asked to identify strengths, challenges and emotions associated with the current Telepractice service journey at Rocky Bay [ 1 ]. Further details on the journey map analysis are described in Appendix 1 (Supplementary Material 1) and in a published article co-authored by the co-designers (Benz et al. [ 37 ]).

Draft journey map visualisation

After workshop two, the embedded researcher drafted a journey map by compiling the co-designer group responses to the analysis activity, which was then circulated for feedback and confirmation. The completed journey map is published with further details on the process in an article co-authored with the co-designers, Benz et al. [ 37 ].

Workshop 3: ideas for addressing pain points

For the third workshop, the co-facilitators selected activities to be completed separately by lived experience and staff co-designers. The lived experience expert activity involved exploring preferences for improving pain points identified through the journey map. The lived experience expert activity was facilitated by the peer researcher and support person and included questions such as, how would it be best to learn how to use telepractice? Visual prompt cards were shared to support idea creation, where lived experience expert co-designers could choose any option or suggest an alternative (Fig.  5 ).

Option cards for Lived experience expert co-designer workshop activity

Simultaneously, the staff co-designers completed a parallel activity to address pain points from a service delivery point of view. These pain points were identified in the clinical and non-clinical staff interviews and from the journey map summary of lived experience expert interviews (analysed in Workshop 2). Staff co-designers completed a mind map based on service blueprinting guidelines by Flowers and Miller [ 38 ]. The activity used service blueprinting to identify a list of opportunities for improvement, with four prompts for co-designers to commence planning the actions required to implement these improvements. The foci of the four prompts were roles, policies, technology and value proposition [ 38 ] (described further in Appendix 1 (Supplementary Material 1)). Each of the four prompts were completed for the ten proposed opportunities for improvement to draft plans for future telepractice service delivery.

Workshop 4: story telling and generation of future state solutions

In the fourth workshop, we introduced the concept of prototyping [ 39 ] as a designerly way to test co-designers’ ideas for improving telepractice according to desirability, feasibility and viability with a wider audience of lived experience experts and staff. The co-designers helped to plan the prototyping, and accessibility was a key consideration in selecting a prototype, as the group were conscious of the target audience.

Creating the prototype was collaborative, allowing co-designers to produce an output representing their ideas. They selected a video storyboard prototype with a staff and customer version formatted similarly to a children’s book. It included cartoon animations completed on PowerPoint, voiceover narration, closed captioning and an introductory explanation from two co-designers.

After workshop four, the co-designers collaborated on the customer and staff prototypes during the two weeks between workshops four and five, with support and input from the facilitators. The prototype files were co-produced, with different co-designers working on the visual aspects, the script for the main audio narration and the introductory explanation.

Workshop 5: finishing the story

The co-design group reviewed the draft prototypes in the final workshop, with specific attention paid to the story’s cohesiveness.

The feedback questionnaire was then created to be completed by viewers outside of the co-design group after engaging with either the staff or the customer prototype. The survey allowed Rocky Bay customers and staff to contribute ideas. Following thoughtful discussions, consensus was reached by all co-designers on the final survey questions (Appendix 2 (Supplementary Material 1)).

A reflection activity concluded the final workshop, allowing co-designers to provide feedback on the co-design process, elements for improvement and aspects they valued in participating in the project. Their reflections on the benefits and challenges of co-design in this study are included in the section Co-designer’s perspectives of the workshop series , with the reflection questions included in Appendix 3 (Supplementary Material 1).

Post prototype reflection session

The prototype feedback responses were reviewed with co-designers in a final reflection session. The group then discussed adaptations to the implementation plan for proposal to Rocky Bay. Following the survey discussion, co-designers reviewed proposed service principles for the new telepractice implementation recommendations. These principles aim to align any future decisions in the implementation and service provision stages of the telepractice project with the intentions of the co-designers. An additional reflection activity was completed, specific to the telepractice proposal they had produced and the prototyping process. Feedback relevant to subsequent discussions of the challenges and benefits of co-design is included in the following section: Co-designer’s perspectives of the workshop series , with the reflection prompts in Appendix 3 (Supplementary Material 1).

Benefits and challenges

Learnings derived from completing a study of this kind are complex. However, it is necessary to reflect on which strategies used in the project were beneficial and which strategies created challenges - anticipated and unexpected. These reflections are discussed in two sections, the first being the challenges and benefits reflected upon by co-designers. The second set of reflections relates to organisational and research project-level benefits and challenges from the perspective of clinical department managers and researchers involved in the project.

Co-designer’s perspectives of the workshop series

Co-designers were positive overall about the workshop series. Responses to a prompt for one-word descriptors of their experience included “captivating, innovative, fulfilling, exciting, insightful, helpful, eye-opening and informative ” .

Co-designing as a team

A foundational strategy implemented in this project was the intentional collaboration of lived experience experts with staff; this linked to the co-design principle of prioritising relationships and sharing power. Multiple reflections commented on feeling like a team and that having diverse perspectives across the group was beneficial.

It was especially interesting to hear the perspective of clinicians (for us, the other side of Telepractice). [Lived experience expert Co-designer]

Additionally, the combination of facilitators, including an embedded researcher with an allied health clinical background, a peer researcher with lived experience and a support person with strengths in breaking down tasks, provided different facets of support and task modelling to the co-designers throughout the process.

Balancing idealism and realism

There is an inherent challenge in collaboration between lived experience experts and service providers, whereby co-designers formulate ideas for service improvement and then, in good faith, propose required changes to be implemented. Strategies to support imagination and idealism while being honest about the constraints of what can be delivered were implemented in the context of this project. This was essential to reinforce to co-designers that their contributions and ideas are valid while tempering their hopes with the truth that organisational change is challenging and funding for change is limited. Co-designers were encouraged to be cognisant of ideas that would require high investment (cost and time) and which ideas faced fewer barriers to implementation. This strategy did not prevent the ideation of changes and prioritising what mattered most to them, and co-designers felt it was beneficial in adding a level of consideration regarding what investments they deemed necessary versus those that would be nice to have. For example, having a person to call for help was viewed as necessary, while a nice to have was more advanced technological features.

I feel that the prototype is useful; however, I worry that nothing will be carried over to the Rocky Bay Service. I feel like more customers will want to access telepractice, and Rocky Bay now needs to start the implementation process to ensure that telepractice is utilised, including processes, education and training. [Clinician Co-designer]

The value of small groups

Working in small groups was another beneficial strategy, aiming to create a more hospitable environment for co-designers to voice their thoughts. The small groups varied across activities and workshops, with facilitators intentionally pairing groups that would best support the lived experience of expert co-designers completing activities. As described in the workshop sections, some activities suited mixed groups, whereas others suited lived experience expert and staff-specific groups. Two reflective comments demonstrated the benefit of the small groups, one from a clinician who reflected on supporting a fellow co-designer:

I found that in our group, all of us had a say; however, [Lived Experience Co-designer name] was a bit overwhelmed at times, so I tried to support her with that. [Clinician Co-designer]

And a lived experience expert co-designer additionally reflected:

The breakout rooms were a very good idea. It can be quite intimidating speaking in front of the main group. I found it much easier to participate in the smaller groups . [Lived experience expert Co-designer]

The second session included an unplanned whole group activity, which challenged co-designers. Co-designers reflections of this experience demonstrate the benefits of smaller groups:

I did feel that at the end when the whole group did the task, there wasn’t as much collaboration as there were quite a few more assertive participants, so the quieter ones just sat back. [Clinician Co-designer]

Accessibility and choice

A challenge navigated throughout the workshop series with a diverse group of co-designers was meeting their varying individual health and other needs. This required responding in sensitive, non-judgemental, and supportive ways to encourage co-designers to engage fully. Examples of support include the presence of a support person and adaption of resource packs for co-designers who have difficulty swallowing (re: refreshments), as well as the previously mentioned non-verbal response cards and accessible name tags.

Accessibility supports were also provided for the peer researcher during facilitation activities, including pre-written scripts to provide clarity when explaining tasks to the co-design group, written reminders and regular check-ins. A lived experience expert co-designer reflected that it was beneficial that they could tell the peer researcher was nervous but appreciated that he was brave and made them feel like they did not need to be perfect if the peer researcher was willing to give it a go.

When facilitating the sessions, the embedded researcher and peer researcher identified that the workshops were long and, at times, mentally strenuous. One co-designer requested “more breaks during each session” . Breaks were offered frequently; however, upon reflection, we would schedule regular breaks to remove the need for co-designers to accept the need for a break in front of the group. The instructions for each activity were visual, verbal and written and given at the start of a task. However, once the co-designers were allocated to breakout rooms, they could no longer review the instructions. Many co-designers suggested that having the instructions in each breakout room’s chat window would have been a valuable visual reminder.

One thing I think might of helped a little is having the instructions in the chat as I know I that I listened but couldn’t recall some of the instructions for the group task. [Lived experience expert Co-designer]

Learning new skills and gaining new insight

The co-designers considered that the benefits of working together included learning new skills and widening their understanding of research, the services they provide or use, and the differences between the priorities of lived experience experts and staff. Two lived experience experts commented that the opportunity to learn collaboration skills and create cartoons using PowerPoint were valuable skills for them to utilise in the future. One clinician reflected that the process of co-design had improved their clinical practice and increased their use of telepractice:

My practice is 100% better. I am more confident in using telepractice and more confident that, as a process, it doesn’t reduce the impact of the service- in some ways, it has enhanced it when customers are more relaxed in their own environments. I have not seen my stats, but my use of telepractice has increased significantly, too. [Clinician Co-designer]

The management co-designer acknowledged that although ideas across the group may be similar, prioritisation of their importance can vary dramatically:

Whilst all the feedback and potential improvements were very similar, some things that I viewed as not an issue, was very different to a customer’s perspective. [Management Co-designer]

Overall, the workshop series challenged co-designers. However, the provision of a supportive and accessible environment resulted in mutual benefits for the research, organisation, and co-designers themselves. The strategy for facilitating the workshops was to pose challenges, support the co-designers in rising to meet them, and take into account their capabilities if provided with the right opportunity. A lived experience expert co-designer summarised the effectiveness of this strategy:

I found the activities to be challenging without being too difficult. Each activity provided enough guidance and structure to encourage interesting group discussions and make collaboration easy. [Lived experience expert Co-designer]

Research and organisational reflections of benefits and challenges of co-design

A significant challenge in completing this project was that building foundational relationships and trust takes time. While the authors view this trust as the foundation on which community-based participatory research and co-design are built, they note the direct tension of the time needed to develop these foundational relationships with the timeline expectations of academic and organisational decision-making. The flexibility required to deliver a person-centred research experience for the co-designers resulted in regular instances when timeline extensions were required to prioritise co-designer needs over efficiency. The result of prioritising co-designer needs over research timeline efficiency was an extended timeline that was significantly longer than expected, which sometimes created a disconnect between the flexibility of co-design and the rigidity in traditional academic and organisational processes.

The impacts of a longer-than-expected timeline for completion of the co-design process included financial, project scope, and sponsorship challenges. The project’s initial scope included a co-implementation and co-evaluation phase; however, due to the three-year time constraint, this was modified to conclude following the prototyping process. Whilst the three-year period set expectations for project sponsors and other collaborators from Rocky Bay, the wider context for the project varied significantly and rapidly over this period. This included two changes in Rocky Bay supervisor and one change in Rocky Bay project sponsor. Additionally, one of the academic supervisors left Curtin. This challenge indicates that the project would benefit from key role succession planning.

The peer researcher role was beneficial in providing an opportunity for a person with lived experience to join the study in a strength-based role and experience academic and business processes. However, challenges arose with the timeline extensions, which required this part-time, casual role to be extended by seven months. While the contract extension posed budgetary challenges, the role was viewed as vital to the completion of the project.

While an essential component of research, particularly involving vulnerable populations, ethical approvals proved challenging due to the non-traditional research methods involved in co-design. It was evident to the authors that while the ethics committee staff adhered to their processes, they were bound by a system that did not have adequate flexibility to work with newer research methods, such as co-design. Multiple methods in this study were heavily integrated into the community, including embedded research, peer research and co-design.

The present ethics process provided a comprehensive review focusing on planned interactions within research sessions (e.g. interviews and workshops). Unfortunately, this failed to account for a wider view, including the initial co-production prior to ethical application and anecdotal interactions that occurred regularly in the organic co-design process. In addition to the repeated submissions required to approve the sequential study format, these interactions created a significant workload for the research team and ethics office. These challenges were compounded by the need to navigate Rocky Bay’s organisational processes and changing business needs within ethical approval commitments.

In the authors’ opinion, prioritising the inclusion of lived experience experts in co-creating outputs to disseminate findings was beneficial. The co-creation enabled an authentic representation of the study to audiences regarding community-based participatory research and co-design method implementation. For example, the presentation of a panel discussion at a conference in which the peer researcher could prerecord his responses to questions as his preferred method of participation. All posters presented by the project were formatted to be accessible to lay consumers and were collaboratively produced, with the additional benefit of the posters being displayed across Rocky Bay hubs for customers and staff to gain study insights.

Due to the co-design method’s dynamic nature, some budgetary uncertainty was challenging to navigate. However, financial and non-financial remuneration for all non-staff participants in the project was prioritised. As previously discussed, the position of peer researcher was a paid role; additionally, all lived experience expert participants were remunerated at a rate of AUD 30/hour in the form of gift cards. The carer representative on the steering committee recommended using gift cards to avoid income declaration requirements from government benefits people may receive. Non-financial remuneration for the valuable time and contribution of the co-designer group included co-authorship on an article written regarding the Journey Map they produced (Benz et al. [ 37 ]) and acknowledgement in any other appropriate outputs. The implementation proposal provided to Rocky Bay included recommendations for continued inclusion and remuneration of co-designers.

Setting a new bar for inclusion

Another benefit to reflect upon, which may be the most significant legacy of the project, was setting the precedence for the inclusion of people with disability in decision-making roles in future projects and research conducted by the University and Rocky Bay. After this project commenced, other Rocky Bay clinical projects have similarly elevated the voices of lived experience in planning and conducting subsequent quality improvement initiatives.

I’m lucky enough to have been part of a lot of projects. But I guess I probably haven’t been a part of continuous workshops, pulling in all perspectives of the organisation perfectly… So, collaboration and getting insight from others I haven’t usually was a very unique experience, and I definitely found value if this were to continue in other projects. [Manager Co-designer]

In summary, the findings from using a co-design method for the telepractice research study produced a series of benefits and presented the researchers with multiple challenges. The findings also addressed a literature gap, presenting in-depth descriptive methods to demonstrate how co-design can be applied to a specific case.

Drawn from these findings, the authors identified six main points which form the basis of this discussion. These include (1) the fact that the necessary time and resources required to commit to co-design process completion adequately were underestimated at the outset, (2) there is a need to support the health, well-being and dignity of lived experience expert participants, (3) academic ethical processes have yet to adapt to address more participatory and integrated research methods, (4) strategies used to foster strong collaborative relationships across a diverse group were valued by all participants, (5) better delineation between terminologies such as co-design and community-based participatory research or patient and public involvement would improve the clarity of research methods and author intent and, (6) broader non-traditional impacts that participatory research can create should be better quantified and valued in the context of research impact. Each point will now be discussed in further detail.

In underestimating the time and resources required to complete the telepractice study, a scope reduction was required. This scope reduction removed the study’s originally planned co-implementation and co-evaluation phases. While Harrison et al. [ 40 ] and Bodden and Elliott [ 41 ] advocate for more frequent and comprehensive evaluation of co-designed initiatives, the authors acknowledge that this became no longer feasible within the study constraints. A growing body of literature indicates expected timelines for completed co-production projects from co-planning to co-evaluation. An example by Pearce et al. [ 5 ] indicated that a timeline of five years was reasonable. In contrast, a more limited co-design process was completed with a shorter timeline by Tindall et al. [ 13 ]. Although neither of these articles were published when this study commenced, they are complementary in building an evidence base for future research to anticipate an adequate timeline.

While co-design and other co-production processes are resource and time-intensive, the investment is essential to prioritise the health and other needs of potentially vulnerable population groups in the context of an imbalance of power [ 42 ]. In exploring the concept of dignity for people with disability, Chapman et al. [ 34 ] indicated that recognising the right to make decisions and proactively eliminating or minimising barriers to inclusion are key to protecting dignity. Community participation in decision-making processes such as this study can result in messy and unpredictable outcomes. However, the onus must be placed on policymakers, organisations, and academia to acknowledge this sufficiently rather than demand conformity [ 15 ].

The authors posit that the study would have benefited from an alternative ethics pathway, which may provide additional required flexibility while upholding the rigour of the ethical review process. The increasing frequency of participatory research studies indicates that challenges experienced by the authors of this study are unlikely to be isolated. Lloyd [ 43 ] described challenges regarding information gathered in-between, before and after structured research sessions, reflecting that they relied on personal judgement of the intent to consent for research use. Similarly, Rowley [ 44 ] reflected on the ethical complexities of interacting with families and respecting their confidentiality within the context of being integrated within an organisation. While these studies were co-production in child protection and education, the ethical challenges of their reflections parallel those experienced in the telepractice study. The risks posed by inadequate ethical support in these contexts are that increased poor ethical outcomes will occur, especially in the in-between times of co-design. Therefore, an ethics pathway that involves more frequent brief liaisons with a designated ethics representative to update project progress and troubleshoot ethical considerations may better support researchers to safeguard study participants.

We believe the decision to complete a sequential workshop series with a consistent group of diverse co-designers, led by co-facilitators, was a strength of the co-design process implemented in the telepractice re-design project. The group worked together across a series of workshops, which enabled them to build solid working relationships. Pearce et al. [ 5 ], Rahman et al. [ 16 ] and Tindall et al. [ 13 ] also demonstrated a collaborative whole-team approach to co-design. By contrast, studies that involved separate workshops with different cohorts or multiple of the same workshop did not demonstrate strong collaboration between co-designers [ 18 , 19 , 20 ]. Nesbitt et al. [ 19 ] explicitly highlighted that they would improve their method by completing sequential workshops with a continuous cohort. Stephens et al. [ 45 ] found that small mixed groups were not sufficient to support the participation of people with disability, indicating that the choice to intentionally balance groups to meet the lived experience expert co-designer’s needs may have been an impacting factor on our success.

A lack of clarity in the terminology used in co-design and community-based participatory practice was identified during the completion of this study. We found that co-design frequently meant either a collaborative design process or good participatory practices [ 46 ]. When viewing the structure of the telepractice re-design project, the overarching research approach was community-based participatory-research, and the method was co-design [ 9 ]. The delineation between the overarching approach and methods clarifies the misappropriation of the term co-design with the intent of meaning public participation [ 46 ] rather than the joint process of creative thinking and doing to design an output [ 11 ]. The use of the two-level structure appears more prominent in the United Kingdom, whereas Fox et al. [ 47 ] systematic review assessing public or patient participants identified that 60% of studies originated from the United Kingdom, compared to the next highest 16% for Canada or 4% from Australia and the United States. To improve clarity and reduce confusion about the terminology used, the authors advocate for greater awareness and implementation of the delineation between the concepts of a community-based-participatory-research/patient or public involvement approach versus the co-design method.

An example of co-design being used where alternate terms such as community-based participatory processes (or research) may be more relevant was the most recent amendment to the act governing the NDIS under which this project resided [ 48 ]. The term co-design could be interpreted as an intent to collaborate with people with disability for equitable involvement in all aspects of the NDIS [ 48 ]. It is proposed that the differentiation of these terms would assist in clarifying the intent of the study and dissuade inaccurate expectations of community involvement or design processes.

Implementing community-based participatory research has demonstrated the potential to create an impact that expands further than the original aim of the study. The skills learned by co-designers, the learning of the research team in collaboration with people with disability, the engagement and skill-building of a peer researcher with lived experience, the organisations who engaged in the co-design process and the academic and lay people who engaged with research outputs, all carry a piece of the impact of the co-design process. Rahman et al. [ 16 ] contend that co-design processes positively impact communities. In the context of this study, the peer researcher was included in the National Disability Insurance Agency’s quarterly report as an example of strength-based employment opportunities, which significantly positively impacted his career prospects [ 49 ]. This project provided skills for people with disability that they value and improved the clinical practice of clinician co-designers, which echoes the conclusions of Ramos et al. [ 15 ], who described that participants felt valued and experienced improved self-esteem. There is additional intent from the authors to positively impact disability providers and academia, to advocate for greater collaboration, and to provide open-access publications to provide a stronger evidence base for co-design in clinical practice and service delivery.

Strengths and limitations

The study provides reflective evidence to support the challenges and benefits experienced during the implementation of the study. However, a limitation in the project’s design was the exclusion of outcome measures to assess the impact of process design choices directly. Stephens et al. [ 45 ] completed targeted outcome measures correlating to accessibility adaptations in co-design and conceded that the variability of findings and individual needs reduced the usefulness of these measures.

The reduction of project scope enabled the completion of the study within the limitations of budgeting and timeline restrictions. Although the scope of the project had some flexibility, there were limitations to how far this could be extended as resources were not infinite, and staffing changes meant that organisational priorities changed. Including implementation and evaluation would have improved the study’s rigour. However, Rocky Bay now has the opportunity to implement internally without potential research delays and restrictions.

The blended and flexible approach to the co-design process was a strength of the study as it met the co-designers needs and maximised the project’s potential inclusivity. This strength has the potential to positively impact other studies that can modify some of the process design choices to suit their context and increase inclusivity [ 11 ]. It is believed that the messiness of co-design is important in meeting the needs and context of each individual study; therefore, no two co-design processes should look the same.

The authors concede that the inclusion of a cohort of people with disability and clinical staff does not represent the entirety of their communities, and their proposed changes may cause some parts of the disability community to experience increased barriers [ 50 ]. It is important to note that while the co-designers who participated in this project provided initial design developments, future opportunities remain to iterate the proposed telepractice service and continue to advocate for equitable access for all.

Recommendations for future studies

Recommendations from this study fall into two categories: recommendations for those intending to utilise the described methods and recommendations for future avenues of research inquiry. For those intending to implement the methods, the primary recommendations are to build ample time buffers into the project schedule, implement key role succession planning and set remuneration agreements at the outset, and work together as partners with the mindset that all contributors are creative [ 51 ] with important expertise and invaluable insights if supported appropriately.

Regarding avenues for future inquiry, we recommend investigating a more dynamic and flexible ethics process that may utilise more frequent short consultations to respond to ethical considerations during the emergent co-design and participatory research.

In the authors’ opinion, supported by co-designers experiences, co-design is a useful and outcome-generating methodology that can proactively enable the inclusion of people with disability and service providers in a community-based participatory research approach. The process is both time and resource-intensive; however, in our opinion, the investment is justified through the delivery of direct research benefits and indirect wider community benefits. We advocate for using community-based participatory-research/processes paired with co-design to generate creative thinking within service design processes. Through co-design processes, we recommend collaborating with a single diverse group of co-designers who have the time and space to build trusting working relationships that enable outputs representative of the group consensus.

Data availability

The dataset supporting the conclusions of this article is predominantly included within the article (and its additional files). However, due to the small number of co-designers reflecting upon the research, despite deidentification, there is a reasonable assumption of identification; therefore, the reflection activity response supporting data is not available.

Abbreviations

Australian Dollar

Guidance for Reporting Involvement of Patients and the Public 2 Checklist

Human Research Ethics Committee

Doctor of Philosophy

Patient and Public Involvement

Microsoft Teams

National Disability Insurance Scheme

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Acknowledgements

The authors acknowledge the contribution of Rocky Bay as the industry partner of this project and would like to thank the Co-designers of this project, without whom none of this was possible. The research team would also like to thank Katie Harris for her time and support throughout the workshop series, which were invaluable to the completion of the project and the formation of the published study.

The article forms part of a PhD project funded by the first author, CB’s Australian Government Research Training Program (RTP) scholarship.

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Contributions

CB and MW liaised with the steering committee and conceived the study and structure. SR, DH and RN guided the protocol development and ethics approval. KAM provided methodological support to the project and subject matter expertise. CB and WJS completed participant recruitment, facilitation of workshops and data collection. KAM and CB ideated the format and content of the article. CB completed data analysis and wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved of the final version of the manuscript.

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Correspondence to Cloe Benz .

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The study was approved by the Curtin University Human Research Ethics Committee (ID# HRE2021-0731), and all participants provided written informed consent before engaging in any research activity.

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Competing interests

Cloe Benz, Richard Norman, Delia Hendrie & Suzanne Robinson do not have any competing interests to declare. Will Scott-Jeffs, Matthew Locantro and Mai Welsh, for all or part of the study period were employed by Rocky Bay a Not-For-Profit Disability Service provider who function as the industry partner for the project. K.A. McKercher is the author of a co-design method book referenced in the article. McKercher also runs a business that helps people co-design.

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Benz, C., Scott-Jeffs, W., McKercher, K.A. et al. Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Res Involv Engagem 10 , 47 (2024). https://doi.org/10.1186/s40900-024-00573-3

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