Participatory Research Research Articles

The philosophical foundations of participatory action research: pragmatism, critical theory, constructivism, feminist epistemology and participatory democracy

PurposeThis paper provides a needed viewpoint discussion on Participatory Action Research's (PAR) foundations. It allows for reflections on how PAR enables the investigation of social issues and takes action to bring about social change.Design/methodology/approachWhat are the conceptual foundations of Participatory Action Research (PAR)? This article aims to review some of PAR's cornerstones as a research approach. It will first briefly describe PAR and consider this approach's particular features. The paper will then explore some foundations of this approach to research.FindingsThe aim of PAR is to systematically collect and analyse data to take action and make a change by generating practical knowledge. However, PAR as an approach to research has philosophical roots. There is a need to reflect on its foundation, and it reflects on how practice.Originality/valueThis paper discusses the foundations of PAR, seeking to bring academics, researchers, community organisations and practitioners closer to this approach's way of thinking. As PAR becomes more used, reflecting on its origins and importance to research and knowledge production is key.

‘There is so much we can learn from the mistakes of Covid-19’: service provider recommendations for more accessible crisis communication in multicultural Australia

ABSTRACT This paper presents the findings of a qualitative, reflexive investigation into the challenges facing Australia’s migrant and refugee communities when engaging with mediated communication during global crisis events. Informed through a Culture-Centred Approach, I present an interpretive thematic analysis of interview and focus group discussion with 16 service providers and community leaders who supported migrant and refugee communities during the Covid-19 pandemic in Melbourne, Australia. Participants discussed significant problems concerning the accessibility of Covid-related communication, noting numerous health equity implications, which many described as heightened for migrant and/or refugee communities with disabilities. These findings lend further credence to calls for more intersectional and participatory research and practice approaches, with participants advocating strategies that centre the embodied expertise of people with direct experience of both racialised exclusion and health inequity. I discuss these recommendations with careful consideration of documented challenges in global efforts to inform crisis communication scholarship, policy, and practice.

A participatory research to assess how a student citizens’ assembly can facilitate the co-creation of nutrition interventions in higher education settings

BackgroundThe transition period from adolescence to early adulthood is critical for developing new nutritional behaviors, making higher education students an important target group for public health nutrition interventions. Given the complexity of nutrition-related behaviors and their various determinants, involving the student population (the future beneficiaries of interventions) and the partners engaged in their implementation when designing campus nutrition interventions is essential. Citizens’ assemblies are deliberative processes which are more and more frequently organized to co-create solutions to complex problems. This study aims 1) to design and implement a student citizens’ assembly using participatory research methods, 2) to describe its process and evaluate its transferability, 3) to evaluate changes in dietary habits, knowledge and citizen practices among students participating in this assembly.MethodsThis study will take place at a French university (University Sorbonne Paris Nord, USPN) located in socio-economically disadvantaged suburbs of Paris. The student citizens’ assembly will gather a mini-public of 30 students enrolled at the time of the study and a co-creation team of academic and non-academic partners involved in student life, nutrition, physical activity, or public policies. The aim of the assembly is to co-create a set of concrete proposals that would enhance USPN students’ access to sustainable diets and physical activity. The protocol is based on a continuous process evaluation and a pre-post design among the mini-public. A mixed-method framework combining quantitative and qualitative approaches will be developed. This study will make use of (i) field observations of the intervention process and transferability, (ii) data collected by questionnaires on pre- and post- dietary habits, knowledge and citizen practices of the mini-public, and (iii) pre-post interviews with a subsample of the same mini-public.DiscussionRelying on participatory research methods, this study will provide new insights into involving higher education students and diverse partners in co-creating campus nutrition interventions. Through the collaborative work of researchers, higher education students, university representatives, public institutions, and local and community actors, this study will provide evidence-based guidance for designing innovative and contextually-relevant nutrition interventions in the higher education setting.Trial registrationThis research was registered at the ClinicalTrial.gov (NCT06580795; registration date: 2024–08-30; https://www.clinicaltrials.gov/study/NCT06580795).

Feeling ambiguous about participation in action research

ABSTRACT This descriptive study presents a critical reflexive account of my research journey within a large-scale and long-lasting participatory project aimed at siting, developing and building a repository for low and intermediate-level radioactive waste (LILW) in Belgium. While at the start of my employment I fostered ambitions to address several democratic deficits that our research team had identified in the participatory process and which had been brought to the fore by my predecessors over the years, this optimistic aim soon collided with the reality of top-down-oriented public participation in an institutionalised context. I draw on personal notes to elaborate on my evolution as a researcher with participatory, democratising and transformative aspirations. Several grounding principles of the ‘action research family’ provided me with a reflexive lens to engage in, analyse and comprehend the participatory process within the cAt-project, as well as to grasp the broader context of the project and to reflect on my own research practice. More importantly, in this article, the first-person perspective offers a critical lens through which to reflect on the democratising aspirations of action research and on the challenges researchers face in putting these aspirations into practice.

Advancing gender equality in international ocean science: Participatory approaches for institutional actions

Gender inequality in international marine and ocean science is an ongoing barrier to ocean governance sustainability goals and requires systemic institutional transformation. Examining how participatory approaches can be applied at international level and contribute to advancing a gender equality agenda can help identify pathways for change. This study uses a timeline of a feminist participatory action research (FPAR) to explore its application within the International Council of the Exploration of the Sea (ICES), working with its community of marine science professionals, to advance gender equality. By documenting and mapping formal and informal actions against a theory of change, the research reveals that stages of awareness, understanding, and action are dynamic and overlap. Despite varying degrees of short-term acceptance and resistance, ongoing community engagement, monitoring, and evaluation is essential for fostering longer-term change. The analysis demonstrates how FPAR can be applied in an intergovernmental organization, with multiple factors, including drivers, data collection, co-creation through dialogue, and specific actions contributing to driving a change agenda and the formulation and publication of a gender equality plan for the organization. The results demonstrate that meaningful actions can occur at various scales, with participatory engagement as central. The results provide evidence of how gender equality as a global meta-norm is diffused into practice and are discussed in the context of the limitations of formal gender equality plans to realize change.

Landscapes, cultures and technologies of loneliness: A call for participatory research with young adults

In this viewpoint, we propose directions for research about loneliness among young adults. We argue that loneliness should not be individualized as a problem of ‘lonely people’ and ‘at risk’ groups but rather approached as an environmental and collective problem. Based on scholarship about the challenges that young adults face nowadays we identify three central themes: landscapes, cultures and technologies of loneliness. These themes can best be researched with participatory approaches involving collaborations with young adults in different life world-settings.

Amplifying their voices: developing participatory research approaches with deafblind children and young people

ABSTRACT This paper describes and reflects upon the first author’s journey from teacher to researcher, working with deafblind children and young people, and the research teams’ development of person-centred research methods. Historically deafblind people, particularly children and young people, have rarely been included in participation action research, in part, due to perceived challenges around communication and access. This paper outlines work being undertaken as part of a PhD project that aims to improve academic and social outcomes for deafblind children and young people. It also outlines a novel methodological focus on accommodating the unique communication and access requirements for deafblind young people, to effectively facilitate engagement in participation action research, and ensure research methods are centred on them, using both established and novel research techniques. Progress to date is outlined, describing the reflexive approach used to collaborate with deafblind young people, to inform our practice, and meet the needs of deafblind children and young people. Based on our learning, we provide wider recommendations to make participation action research more accessible for participants with deaf blindness or sensory difficulties.

Addressing fraudulent responses in quantitative and qualitative internet research: case studies from body image and appearance research

ABSTRACT The rise of online research methods has expanded the scope of research globally and has made research more inclusive. However, it has also led to a surge in fraudulent research participation, with individuals and bots infiltrating studies for personal gain or disruption. This is of particular concern in mental health studies, as fraudulent responses jeopardize interventions and care efforts. This paper addresses these challenges, presenting case studies from psychological research. The urgent need for a comprehensive understanding of fraudulent responses in both quantitative and qualitative online research is emphasized, urging the research community to confront and mitigate this issue effectively.

Describing youth participatory evaluation of educational interventions as a key domain of the social determinants of health: protocol for a scoping review

IntroductionYouth participatory evaluation is one model for monitoring global outcomes and assessing interventions to improve young people’s health equity and well-being while embracing principles of participation and empowerment. Little is...

Naturalistic substance use before/during MTurk research participation is associated with increased substance demand and craving.

Although crowdsourcing platforms are widely used in substance-use research, it is unclear what percentage of participants use substances at the time of participation and how this might affect data quality, behavioral outcomes, or decision making. We conducted a secondary analysis of data collected on MTurk for a two-session, within-subject experiment recruiting individuals who regularly use alcohol, cannabis, cigarettes, or opioids. We analyzed 527 observations collected across two sessions (Session 1: n = 303, Session 2: n = 224) on measures of substance use before (within 3 hr)/during participation, data quality, demand in hypothetical purchase tasks, delay discounting, and craving. Substance use before/during participation was common (35.7%). Some participants reported substance use before/during both (25.4%) or only one (20.1%) of the sessions. Between-subject analyses of the first session data revealed that participants who used substances before/during participation did not differ on quality measures yet were slower to complete the survey. Controlling for individual differences in demographic variables and typical substance use, using a substance before/during participation was associated with increased hypothetical consumption of substances when the substance was free (demand intensity) and higher craving for substances, but not delay discounting. Substance use before/during MTurk participation among individuals who regularly use substances is prevalent and may impact outcome measures or standardization across sessions in repeated measures designs. Several implications have emerged, including statistically or experimentally controlling for substance use occurring before/during participation, which could improve the validity and rigor of online substance use research, and should be considered a part of best practices. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

How Much Participation Is Participatory? Opportunities and Challenges of Doing Participatory Action Research With Latin American teachers.

This paper provides a detailed account of a participatory action research project carried out with trainee teachers in Chile. Two participant cohorts embarked upon a research study seeking to identify instances of violence and exclusion in their classrooms. Such exploration was conducted through a series of participatory workshops that explored the link between violence and inequality, as well as how nonviolent approaches might assist in fostering more inclusive learning environments. Both participatory action research (PAR) and workshops as a research methodology constitute novel approaches within the Chilean context, where a large number of studies interrogating issues of inequality and classroom violence are of a descriptive rather than empirical nature. Consequently, this paper gives a rationale for using PAR in the first place, then provides a detailed account of how each iteration was designed, the changes that were made in between and the degree of participation achieved with each cohort. Further, the paper makes an argument for a wider use of PAR as a method that strives for social justice and equity in education, while at the same time exploring its advantages, common critiques, and the challenges encountered during the study. Finally, and in light of what transpired in this study, this paper posits that workshops constitute a sustainable participatory research method that provides space for collaboration, creativity, and self-inquiry, while considering several improvements and modifications for future studies.

Online and Remote Community-Engaged Facilitation: Pedagogical and Ethical Considerations and Commitments

In the early days of the COVID-19 pandemic, many community-engaged practitioners struggled with how to meaningfully and ethically build, maintain or sustain relationships, partnerships, or community-engaged projects, amidst mass upheaval, loss, and uncertainty. Prior to the pandemic, workshops, meetings or community events happened in community drop-ins, social service organizations, or in neighbourhood meeting places. Due to social distancing restrictions, these physical environments abruptly changed to online meeting and messaging applications, phone, and even postal mail. This drastically impacted how community-engaged practitioners approached their facilitation work with communities. This rapid shift also amplified many ethical complexities, like privacy and confidentiality, equitable access, and safety, for those facilitating workshops or programs in non-profit, community-based and participatory research contexts. This article explores findings from a participatory study on how community-engaged practitioners (i.e., community artists, community facilitators, participatory researchers, and participatory visual methods practitioners) across Canada adapted their facilitation approaches to online or remote platforms in the context of COVID-19. We briefly describe our process of doing participatory research online during a pandemic and share findings on how community-engaged practitioners articulated the ethical commitments they brought to their facilitation practice as well as pedagogical and ethical considerations identified for online or remote (i.e., phone, mail) community-engaged facilitation. We conclude by offering reflections on what might be gleaned about online and remote community-engaged facilitation for the present moment. We hope that this article - and the illustrations enclosed - will serve as a guide for emerging and established community-engaged practitioners to reflect on their ‘how and why’ of facilitation when working with and alongside communities for social change.

Involving Nurses in Participatory Action Research: Facilitators and Barriers

Involving nurses in research and quality improvement is desirable because nurses are often aware of weaknesses in care or organizational processes. In participatory action research (PAR), practitioners are encouraged to identify problems they encounter and, together with the researcher, develop strategies to solve these problems. This study aimed to evaluate the process of involving nurses in PAR, as well as learn what hampers and facilitates collaboration between the nursing team and the researcher and facilitator. Data collected during a 2.5-year PAR process with a nursing team (15–18 participants) on a geriatric rehabilitation ward was deductively analyzed using seven quality criteria (collaboration, prudent handling of assumptions, accountability, participation, reflection, knowledge sources, and transparency). This study describes how reflection and collective learning as core processes of PAR were facilitated using complementary knowledge sources (theoretical models, knowledge based on practical experiences, and results of empirical research collected during the PAR). The study uncovered that providing the time and setting for reflection and collective learning enables a nursing team to be actively involved in PAR: it helps them diagnose their current practice, plan ahead, and critically experiment with actions. Additionally, a positive learning climate is a prerequisite for this process. However, without a strong link between quality policy and consequent facilitation of participation through earmarked time, these efforts might not lead to sustainable changes. A more permanent link between PAR initiatives and organizational ambitions regarding quality of care is recommended.

Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research

BackgroundThis paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden.MethodsA Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used.ResultsA total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients’ and their families’ lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult.ConclusionsThe study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services.Trial registrationClinical Trial Registry of India (CTRI/2023/04/051357).

Empowering Voices: Fostering Reflective Dialogue and Redefining Research Dynamics in Participatory Approaches With the Autistic Community

Within this brief report, the authors, who are mostly neurodivergent and a majority autistic, outline some of the challenges and historical failings of participatory research with the autistic community. There is an urgent need to explore creative ways to ensure that research engages with autistic people in an active, meaningful, and valuable way (Den Houting et al., 2021; Fletcher-Watson et al., 2019; Garfield & Yudell, 2019). The authors detail the process of using reflective dialogue to explore the participatory research group’s personal experiences of mental health at a university. The participatory group later presented their experiences at a webinar attended by more than 200 strategic and supporting staff from UK universities. The group found reflective dialogue to be useful in addressing many of the failings of participatory research with the autistic community, such as redressing power imbalances and finding it to be personally beneficial and validating. The authors detail how this might be implemented and argue that this approach has valuable applications within autism research and beyond and should be explored further.

Racial Microaggressions in U.S. High Schools: An Illustration of the Full YPAR Process From the Youth Research Council

In 2021, the Youth Research Council (“YRC”) was formed to bring together high school students in the Northern Virginia region of the United States to conduct research on topics important to those youth (“YRC Fellows”). In its inaugural year, YRC Fellows designed a multi-method study to explore the effects of racial microaggressions on the mental health of their peers and to better understand how young people resist racial microaggressions and their often-deleterious effects on mental health. This article details the YRC’s full process, from formation of research questions to sharing findings in critical and participatory ways, as a model of youth participatory action research (YPAR). In addition to describing the ways in which the YRC embodies a YPAR epistemology, we are also showing our methods. To do this, we have built the article around a transcribed conversation held in July 2023 with the intention of teasing out and sorting through the implications of the YRC’s findings based on our first two years of research. The authors of this article include YRC Fellows and university-based researchers who facilitate the YRC.

Working Together to Enhance Autonomy: A Participatory Action Research Among Residents and Staff in a Nursing Home

Care in nursing homes is evolving from a medical to a person-centered orientation. Principles such as participation and autonomy are seen as the basis for person-centered care to live life as a resident prefers. However, often decisions are made for and about the resident by others, which might hinder autonomy. How can a more person-centered way of caring be achieved at the level of the unit with a focus on autonomy and participation? Participative action research (PAR) has promising elements to bring about a change. The aim of this study is to enhance autonomy in day to day practice, with a PAR approach. This led to the following research question: what processes between residents and staff in the participative action research enabled the enhancing of autonomy on the unit level? An action group consisting of residents and staff in one unit of a nursing home identified, undertook, and evaluated actions to enhance residents’ autonomy. The generated data were analyzed with the critical creative hermeneutic analysis. In total, eight themes to describe the process were found. Although there was no evidence that the actions undertaken during the PAR directly led to enhanced autonomy, the learning process and the collaboration of residents and staff is promising. It is recommended to include residents and staff as partners in actions to enhance autonomy in the nursing home. The PAR process worked well for this objective. However, participants’ physical conditions should be considered when choosing working methods. Creative work forms are not always appropriate for the population targeted.

Clinical Data Flow in Botswana Clinics: Protocol for a Mixed-Methods Assessment.

Botswana has made significant investments in its health care information infrastructure, including vertical programs for child health and nutrition, HIV care, and tuberculosis. However, effectively integrating the more than 18 systems in place for data collection and reporting has proved to be challenging. The Botswana Health Data Collaborative Roadmap Strategy (2020-24) states that "there exists parallel reporting systems and data is not integrated into the mainstream reports at the national level," seconded by the Botswana National eLearning strategy (2020), which states that "there is inadequate information flow at all levels, proliferation of systems, reporting tools are not synthesized; hence too many systems are not communicating." The objectives of this study are to (1) create a visual representation of how data are processed and the inputs and outputs through each health care system level; (2) understand how frontline workers perceive health care data sharing across existing platforms and the impact of data on health care service delivery. The setting included a varied range of 30 health care facilities across Botswana, aiming to capture insights from multiple perspectives into data flow and system integration challenges. The study design combined qualitative and quantitative methodologies, informed by the rapid assessment process and the technology assessment model for resource limited settings. The study used a participatory research approach to ensure comprehensive stakeholder engagement from its inception. Survey instruments were designed to capture the intricacies of data processing, sharing, and integration among health care workers. A purposive sampling strategy was used to ensure a wide representation of participants across different health care roles and settings. Data collection used both digital surveys and in-depth interviews. Preliminary themes for analysis include perceptions of the value of health care data and experiences in data collection and sharing. Ethical approvals were comprehensively obtained, reflecting the commitment to uphold research integrity and participant welfare throughout the study. The study recruited almost 44 health care facilities, spanning a variety of health care facilities. Of the 44 recruited facilities, 27 responded to the surveys and participated in the interviews. A total of 75% (112/150) of health care professionals participating came from clinics, 20% (30/150) from hospitals, and 5% (8/150) from health posts and mobile clinics. As of October 10, 2023, the study had collected over 200 quantitative surveys and conducted 90 semistructured interviews. This study has so far shown enthusiastic engagement from the health care community, underscoring the relevance and necessity of this study's objectives. We believe the methodology, centered around extensive community engagement, is pivotal in capturing a nuanced understanding of the health care data ecosystem. The focus will now shift to the analysis phase of the study, with the aim of developing comprehensive recommendations for improving data flow within Botswana's health care system. DERR1-10.2196/52411.

Collaborative climate labs: A youth-led methodology for co-creating community responses to climate change

This article presents the Collaborative Climate Laboratories (CiCli-Labs), a participatory research methodology that bridges citizenship, science and politics. This methodology is grounded on young people’s knowledge and experience about their communities and seeks to develop a strategy for co-designing climate solutions with local stakeholders. Carried out in schools, the CiCli-Labs engage scientists, activists, business owners, and politicians in discussing climate problems identified by young people. By bringing together different positionalities that emerge from people’s diverse social roles, the CiCli-Labs aim to foster conditions for democratic citizenship and climate justice, embracing the necessarily conflicting yet binding dimensions of politics that can produce transformative and reciprocal learning. Additionally, it responds to the growing demand within educational research for community-based approaches capable of tackling the shortcomings in promoting youth agentic power in participatory designs, often marked by one-off events and youth-washing practices. The CiCli-Labs’ methodology builds on community profiling, through which students identify climate-related issues that work as catalysts for broader dialogues with local actors, challenging traditional adult-centric power dynamics. The methodology evolves through a sequential design based on the adaptation of participatory tools and methods: i) Climate Problem Tree; ii) Climate Social Cartography; iii) Pros-and-Cons Circuit; iv) Solutions Funnel; v) Climate Speed Dating; vi) Hands on Earth and Eyes on Clouds. The methodology was implemented in eight schools in northern Portugal, involving more than 300 students (grades 8 to 12). We discuss the rationale and practicality of the CiCli-Labs while mobilising empirical illustrations of the methodological process and participants’ perceptions about it, thereby contributing to furthering the problematisation of democratic research practices with young people.

Partnering for Progress: Lessons Learned From Mental Health Assessment for Youth Living With HIV in India Through Community-Based Participatory Research

Youth living with HIV (YLHIV) face diverse mental health challenges necessitating interventions informed by their lived experiences. Failure to do so can perpetuate a self-reinforcing cycle of misaligned and ineffective support, further exacerbating existing vulnerabilities. This study directly addresses this gap by using a community-based participatory research (CBPR) approach to empower YLHIV in India to address their mental health challenges. YLHIV actively participated in adapting and implementing a culturally responsive mental health screening program. The study, incorporating CBPR principles at every step aimed to identify practical methods for integrating YLHIV voices in research, and showcase the value of YLHIV participation in co-creating and implementing impactful interventions. Six youth investigators aged 18-24, born with HIV and residing in southern Indian states underwent certification in human subjects’ protection and training in mental health screening and survey administration techniques. They actively shaped the research process by culturally adapting standardized mental health screening tools (PHQ-9, GAD-7) through iterative discussions with experts, drawing on their own perspectives. Following field assessments of the mental health screening tools among their peers, they documented their reflections in surveys and written essays. Youth investigators’ involvement improved the research process by optimizing tools, combating stigma, and facilitating reliable data collection. Beyond data collection, the youth investigators’ participation significantly boosted their own knowledge, self-confidence, and research skills. This study serves as an illustrative model of CBPR in mental health research among YLHIV, highlighting the importance of interactive training, continuous feedback mechanisms, and respectful youth engagement in fostering impactful research that can inform tailored sustainable interventions.