We did it together: a participatory action research study on poverty and disability

The previous chapter discussed the theoretical and historical basis of community-based participatory research and some basic principles of participatory action research (PAR). It also cautioned against the uncritical adoption and use of concepts such as “community”, “participation” and “empowerment”. This chapter moves beyond the epistemology and ontological basis of PAR, to discussing how participatory action research might be used to conduct an ecohealth research project in the field.

Occupational therapy has a strong history of embracing concepts of client empowerment. However there is limited literature in the field on how to achieve empowerment, or on how to extend empowerment to the level of the community and social groups and services within it. This article discusses how concepts and strategies of participatory action research, an extension of empowerment theory, can be used to inform service development and evaluation in occupational therapy. The participatory action research approach is illustrated using two case examples of participatory action research programs for persons with chronic fatigue syndrome and individuals with autoimmune deficiency syndrome (AIDS). A critical analysis of the application of this approach to research and practice is provided. Finally, the paper identifies key principles of participatory action research that can be used to guide occupational therapy services and empower both individuals and communities.

Firearm-related injury and mortality prevention strategies are often incompatible with and potentially ineffective for the very populations at risk. Such incompatibility is reflective of a cultural disconnect between investigators and prevention specialists and those who own and use firearms. The current paper describes Project GRIP, a research study that was guided by the principles of Participatory Action Research (PAR). We present the project as a case-example and demonstration of how PAR principles can inform an approach to partner with firearm owners in injury prevention research. Though PAR is a general approach and not a set of techniques, we describe the strategies we used in the hopes that they may be useful for investigators using PAR with firearm owners. We discuss the project and our approach across different stages of the process, including entering into PAR with firearm owners, building partnerships, developing a shared vision, mutual understanding, and co-learning, building and maintaining positive relationships, and executing the project tasks. The PAR approach and the intentional emphasis on partnership is, in our opinion, vital to ensuring that the perspectives of firearm owners are incorporated into the research literature so that more ecologically valid and potentially effective injury and mortality prevention strategies can be developed and disseminated.

Participatory Action Research (PAR) approaches and methods have seen an explosion of recent interest in the social and environmental sciences. PAR involves collaborative research, education and action which is oriented towards social change, representing a major epistemological challenge to mainstream research traditions. It has recently been the subject of heated critique and debate and rapid theoretical and methodological development. This book captures these developments, exploring the justification, theorisation, practice and implications of PAR. It offers a critical introduction to understanding and working with PAR in different social, spatial and institutional contexts. The authors engage with PAR’s radical potential, while maintaining a critical awareness of its challenges and dangers. The book is divided into three parts. The first part explores the intellectual, ethical and pragmatic contexts of PAR; the development and diversity of approaches to PAR; recent poststructuralist perspectives on PAR as a form of power; the ethic of participation; and issues of safety and well-being. Part two is a critical exploration of the politics, places and practices of PAR. Contributors draw on diverse research experiences with differently situated groups and issues including environmentally sustainable practices, family livelihoods, sexual health, gendered experiences of employment, and specific communities such as people with disabilities, migrant groups, and young people. The principles, dilemmas and strategies associated with participatory approaches and methods including diagramming, cartographies, art, theatre, photovoice, video and geographical information systems are also discussed. Part three reflects on how effective PAR is, including the analysis of its products and processes, participatory learning, representation and dissemination, institutional benefits and challenges, and working between research, action, activism and change. The authors find that a spatial perspective and an attention to scale offer helpful means of negotiating the potentials and paradoxes of PAR. This approach responds to critiques of PAR by highlighting how the spatial politics of practising participation can be mobilised to create more effective and just research processes and outcomes. The book adds significant weight to the recent critical reappraisal of PAR, suggesting why, when, where and how we might take forward PAR’s commitment to enabling collaborative social transformation. It will be particularly useful to researchers and students of Human Geography, Development Studies and Sociology.

Digital health measurement offers opportunities to address several primary health care challenges, but health care professionals encounter significant implementation barriers. Therefore, resources need to be developed to facilitate the integration of digital health measurement into daily practice. We aim to identify the most appropriate format and content for an intervention to support primary health care professionals in adopting digital health measurement. In addition, we describe and reflect on the development process. We used a participatory action research approach as well as user-centered design principles. A total of 19 primary health care professionals from 4 disciplines-physical therapy, occupational therapy, speech and language therapy, and general practitioner practice assistance-participated in intervention development as end users. External experts were consulted to broaden perspectives. Data were collected across 3 iterative stages (concept, design, and testing and trials) between January 2022 and December 2023 during cocreative meetings, individual interviews, focus group discussions, usability testing, and prototype use in daily practice. Data were analyzed using content analysis and descriptive statistics. A web-based, stepwise intervention combining theoretical information, practical aids, examples, and experiences proved most suitable. Key features were concise content, intuitive and attractive graphic design, and flexible navigation and functionalities. Iterative improvements led to an increase in usability ratings from "okay" to "good to excellent." Different health care disciplines benefit from similar support strategies; yet, this requires a careful balancing of intervention design and content. Combining participatory action research and user-centered design principles was useful to tailor the intervention to end users' daily routines. The described development process offers a replicable framework for creating support strategies for digital health measurement in various health care settings.

Objective: This research aimed to empower rural communities in Southeastern Mexico by using cultural knowledge of Atractosteus tropicus to support the creation of microenterprises based on its sustainable use, promoting socio-economic development. Theoretical Framework: The study draws on participatory action research (PAR) and sustainable development principles, aligning community-based resource management with Sustainable Development Goals (SDGs). Method: A participatory action research approach was applied, integrating needs assessment and community involvement at all stages. Training programs were tailored to local needs, focusing on tropical gar biology, ecology, and traditional gastronomy, alongside tools for marketing, entrepreneurship, and microenterprise management. Results and Discussion: The project fostered innovative food products with sustainable packaging and promoted women’s active leadership in microenterprise initiatives. Sustainable fishing practices were strengthened, directly contributing to SDGs such as poverty reduction, zero hunger, decent work, reduced inequalities, responsible consumption, life below water, and partnerships. Community feedback reflected a positive response to training and new economic opportunities. Research Implications: This research underscores the value of culturally relevant, community-centered approaches in sustainable development, demonstrating potential for broader applications in rural regions with unique resources. Originality/Value: This study highlights an integrative model where traditional ecological knowledge and local resources meet entrepreneurship and sustainability, setting a replicable framework for community empowerment and biodiversity conservation.

This chapter describes the relevance of a participatory action research approach to working with marginalized communities because it emphasizes the equal involvement of community members in conceptualizing, conducting, and interpreting research. We describe the key principles of participatory action research that were implemented with South Tucson Prevention Coalition, including open dialogue, community-led research, and reflection linked to collective action. Given the importance of equal roles between researchers and community members, the university researchers who participated in South Tucson Prevention Coalition and the students who interviewed key stakeholders for purposes of this book provide their own subjective positionality statement to shed light on their own privileges, assumptions, and revelations gleaned from their work with South Tucson Prevention Coalition.

Introduction: While existing reflections on participatory action research (PAR) emphasize the benefits experienced by participants in such studies, they often fail to critically interrogate the PAR process. This gap underscores the significance of process-oriented papers that illuminate the dynamics, supports, and hurdles of PAR, crucial for aligning scholarly endeavors with its fundamental principles of equitable participation, social transformation, and reflexivity. This paper aimed to bridge these gaps by presenting insights from both older adults with age-related vision loss (ARVL) and university researchers, shedding light on their application of PAR principles during the initial stages of a project focused on identifying research priorities. Methods: The foundational PAR study, forming the basis of this paper, involved eight older adults aged 65 and above with ARVL. Additionally, three university researchers participated, including a faculty member and two students (one pursuing a PhD and the other an MSc). The PAR process encompassed three half-day meetings, dedicated to investigating how environmental factors (physical, social, cultural, political, and institutional) influence the engagement of older adults with ARVL in their daily activities. Following completion of the three half-day meetings, the university co-researchers conducted individual interviews with each older adult, as well as a collective reflexive exercise involving the university co-researchers, to delve into their personal journey through the PAR process, encompassing achievements, challenges, and encountered tensions. Results: The study’s outcomes were distilled into three central thematic domains: (1) attentiveness to power differentials; (2) realization of personal and social transformation; and (3) a steadfast commitment to reflexivity. Discussion: This paper endeavors to fill a void within the existing PAR landscape by providing process-oriented insights that spotlight the intricacies of the PAR journey, inclusive of encountered challenges. By candidly acknowledging these challenges, future scholars will be better equipped to harness PAR in a manner that is truly aligned with its core principles.

The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness. Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live 'well'. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme. The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme. We assert that the facilitator's skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate. If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.

This paper presents an exemplar of blending the principles of participatory action research and elements of grounded theory in a disaster risk reduction education case study. It illustrates and describes a modified methodological approach that was used during the needs’ assessment and analysis phase of a multiphase study on teaching of disaster risk reduction in science among public schools in Biliran Province, the Philippines. The approach was conceived upon considering the overarching aim of the study which is the effective, efficient, inclusive, and proactive teaching of disaster risk reduction in science, the complex nature of the disaster risk reduction education, and the multiple stakeholders involved in disaster risk reduction among public schools. Results revealed that the modified methodological approach provided a co-learning environment for both participants and researchers, created an opportunity to maximize participation toward generating knowledge, prioritizing problems, and conceptualizing solutions, strengthened the data collection and analysis process, hence ensuring quality in the entire research process, and addressed the participation issues pointed out in grounded theory studies. The modified methodological approach may be relevant and applicable to similar studies that are complex and emerging like the teaching of disaster risk reduction in science.

For serious practitioners of participatory action research, it is helpful to identify its principles. This paper outlines some principles of participatory action research in Australia that have been derived from theory and practice in both Western and cross-cultural contexts. Participatory action research is identified with critical social theory and is exemplified with two perspectives from participatory action research in Northern Australian Aboriginal communities.

Including excluded perspectives in participatory action research

This article is based on the webinar “The Ethics of Research on Poverty” held in April 2018. Coauthored by the four presenters of the webinar, it brings together perspectives on poverty from lived experience in the United States, academia, the District Six Museum in South Africa, and the Joseph Wresinski Centre for Archives and Research in France. The article argues that the ethical principles of participatory action research (PAR) are too generic to address the specific characteristics of research projects conducted with people living in poverty. PAR projects on poverty require, in addition to the relevant general ethical principles of PAR (i.e., leading transformational PAR, treating all participants as co-researchers, nurturing respect for the individual and the group, and raising awareness on the level of literacy of each participant), specific ethical guidelines. For PAR to address the needs of people living in poverty, the choice of words on poverty should be aimed at reducing symbolic and epistemic violence, questions should be framed so as to encourage knowledge to be shared, research should yield direct benefits to participants and outweigh risks, and researchers should aim at eradicating extreme poverty. Researchers failing to apply these principles may find themselves guilty of committing unintended symbolic or epistemic violence to the thinking of people in poverty or fall for the soft bigotry of low expectations that inevitably triggers underperformance. To bridge the divide between narratives of people in poverty and interpretations of these narratives , researchers should be aware of their own biases and remain open to being challenged.

A growing number of researchers are employing participatory research approaches to address social determinants of health. Despite evidence supporting school-based participatory action research (PAR) approaches as powerful health intervention strategies and recent calls to assess the implementation of PAR processes and outcomes, there is a paucity of research that addresses the meaning of sustainability in participatory health interventions in schools. This case study addresses some of the complexities that emerge when partners with a variety of goals and experiences engage in participatory action research (PAR) within complex institutions. We describe two PAR initiatives within a pragmatic intervention in two middle schools aimed at improving the school environment to promote school engagement and connectedness among adolescents, highlighting perspectives from PAR facilitators and school administrators. Findings underscore complexities of participatory research approaches, including the dynamic and iterative nature of the intervention and limited resources to support collaboration, and stress the role of alignment to existing systems and processes and the need to shift roles and responsibilities in navigating complexities to achieve sustainability. Ultimately, we (re)conceptualize the meaning of sustainability in participatory interventions as a process that is shifting and inseparable from the collaborative, reflective practices characteristic of participatory approaches.

This paper describes the design of the LIKE programme, which aims to tackle the complex problem of childhood overweight and obesity in 10–14-year-old adolescents using a systems dynamics and participatory approach. The LIKE programme focuses on the transition period from 10-years-old to teenager and was implemented in collaboration with the Amsterdam Healthy Weight Programme (AHWP) in Amsterdam-East, the Netherlands. The aim is to develop, implement and evaluate an integrated action programme at the levels of family, school, neighbourhood, health care and city. Following the principles of Participatory Action Research (PAR), we worked with our population and societal stakeholders as co-creators. Applying a system lens, we first obtained a dynamic picture of the pre-existing systems that shape adolescents’ behaviour relating to diet, physical activity, sleep and screen use. The subsequent action programme development was dynamic and adaptive, including quick actions focusing on system elements (quick evaluating, adapting and possibly catalysing further action) and more long-term actions focusing on system goals and/or paradigm change. The programme is supported by a developmental systems evaluation and the Intervention Level Framework, supplemented with routinely collected data on weight status and health behaviour change over a period of five years. In the coming years, we will report how this approach has worked to provide a robust understanding of the programme’s effectiveness within a complex dynamic system. In the meantime, we hope our study design serves as a source of inspiration for other public health intervention studies in complex systems.