Profiting off community or a profit to the community? A case for re-radicalizing participatory research

Participation is recognised as having a key role in health, for increasing the relevance and effectiveness of health interventions, for the health promoting benefits of community empowerment and as an ethical imperative. Participatory approaches to health research are also increasingly valued for bringing the insights of lived experience, and more relevant research and action. In this paper, we explore key remaining issues in participatory action research highlighted by scholars, practitioners and published literature, and highlight some useful conceptual resources which help to better understand them. We distinguish participatory action research as a paradigm involving those most affected throughout the research process, contrasting it with the more limited use of participatory tools and methods. We outline several aspects of participatory action research in health that would benefit from further theoretical and practical development, including: shifting power in the research process; the compatibility of participatory research with biomedical research; linking local inquiry and action to broader changes in policy and practice; and working with experiential knowledge in a rigorous research process. We highlight useful theory from a range of disciplines (including beyond the participatory research literature) that helps to understand some of the key processes and dynamics implicated in the issues highlighted and how this affects the outcomes achieved. We outline and share these conceptual/theoretical resources, identified as part of preparation for conducting a realist review on participatory action research in health, to contribute to ongoing reflection and development in the field.

Participation is recognised as having a key role in health, for increasing the relevance and effectiveness of health interventions, for the health promoting benefits of community empowerment and as an ethical imperative. Participatory approaches to health research are also increasingly valued for bringing the insights of lived experience, and more relevant research and action. In this paper, we explore key remaining issues in participatory action research highlighted by scholars, practitioners and published literature, and highlight some useful conceptual resources which help to better understand them. We distinguish participatory action research as a paradigm involving those most affected throughout the research process, contrasting it with the more limited use of participatory tools and methods. We outline several aspects of participatory action research in health that would benefit from further theoretical and practical development, including: shifting power in the research process; the compatibility of participatory research with biomedical research; linking local inquiry and action to broader changes in policy and practice; and working with experiential knowledge in a rigorous research process. We highlight useful theory from a range of disciplines (including beyond the participatory research literature) that helps to understand some of the key processes and dynamics implicated in the issues highlighted and how this affects the outcomes achieved. We outline and share these conceptual/theoretical resources, identified as part of preparation for conducting a realist review on participatory action research in health, to contribute to ongoing reflection and development in the field.

Based on experiences with participatory research projects with forced migrant and ethnic minority groups in Germany, Israel and Canada, Dr. Gottlieb will first reflect on the structural challenges that especially young researchers face when doing - or intending to do - participatory research. Secondly, she will discuss ethical issues that can arise in participatory research, in particular when grave inequalities, fragmentations and conflicts within the researched communities exist. In such contexts, certain generally valid research ethical questions merit particular attention; e.g. the questions ‘Who represents whom?’, ‘Who gets access to the research process and its benefits?’ and ‘How are direct and indirect benefits distributed among different community members?’ Another set of questions concerns potential discrepancies between common goals in participatory research - such as empowerment, agency, leadership and innovation - and community norms. E.g., what is the risk of participatory research projects intensifying existing internal, e.g. intergenerational or gender-based, rifts and/or getting their practice partners into conflict with their communities and customs? To what extent ought research encourage individuals within a community to “go against the stream”? In light of (post-)colonial histories and trauma such questions can be especially charged, both politically and emotionally. It is therefore a huge responsibility for the researcher to carefully consider the role of the study within its wider context, to weigh its potential (intended and unintended) effects and broader outcomes on individual and community levels, and to balance them with the study goals and intended benefits and its consequences for health research.

The increasing use of participatory research (PR) approaches to address pressing public health issues reflects PR's potential for bridging gaps between research and practice, addressing social and environmental justice and enabling people to gain control over determinants of their health. Our critical review of the PR literature culminates in the development of an integrative practice framework that features five essential domains and provides a structured process for developing and maintaining PR partnerships, designing and implementing PR efforts, and evaluating the intermediate and long-term outcomes of descriptive, etiological, and intervention PR studies. We review the empirical and nonempirical literature in the context of this practice framework to distill the key challenges and added value of PR. Advances to the practice of PR over the next decade will require establishing the effectiveness of PR in achieving health outcomes and linking PR practices, processes, and core elements to health outcomes.

This paper introduces the emergent role of the state-sponsored student entrepreneur within the academic capitalist knowledge/learning regime. Drawing on two clarifying cases of such entrepreneurship, the study explores the shifting boundaries between public and private sectors, the creation of new circuits of knowledge, and the entrepreneurial learning environments that are revealed. An important modification and extension of Slaughter and Rhoades' (2004) theory of academic capitalism is provided in casting students not simply as targets and victims of this trend but as active entrepreneurial agents who in important ways point to how deeply embedded the regime has come to be. Our cases reveal a situation in which students learn content and entrepreneurial strategies from faculty members, tap into university expertise and infrastructure in the form of important interstitial units and personnel, and become partners with faculty in commercial ventures.

OBJECTIVE: To review and discuss issues related to participatory research, as they apply within the arena of cancer control. DESIGN: A participatory research study with breast cancer self-help groups is referred to for description and discussion purposes. That study employed primarily individual and group interviews to assess benefits and limitations of self-help groups. SETTINGS: Four breast cancer self-help groups in Ontario communities provided the core involvement in the participatory research project. RESULTS: The values and practices of mainstream academic research often conflict with those of research emphasizing participation and control of communities under study, leading to a variety of challenges for the latter approaches. Practical constraints faced by many community groups have important implications for participatory research approaches. CONCLUSIONS: A balance needs to be found for participatory research within cancer control - one that ensures that the core aims of participatory research are maintained, while simultaneously acknowledging the various challenges that make a fully participatory project unrealistic. Steps can be taken to achieve a workable balance.

The growth of relational, participatory, collaborative and emergent research approaches in recent years has brought new ethical challenges for research with children and youth. These approaches require greater consideration of the specific social and cultural contexts of the research, along with the greater emphasis on researcher–participant relationships that often occur over sustained periods of time. Very few tools are available to help researchers think through the everyday ethical dilemmas such research can raise. In this article, we review the theoretical underpinnings of feminist and indigenous research methodologies that have encouraged these emerging approaches. Through examining an 18-month Youth Participatory Action Research (YPAR) project case study, we critically review ethical moments relating to negotiating consent over a sustained period of time, enhancing co-design and navigating power issues between adult and youth researchers. We conclude with a number of questions to ‘think with’ when reflecting on ethical research with children and youth.

Background Understanding the experiences of transgender and gender-diverse (TGD) youth is essential for developing appropriate support services. However, studies focusing on TGD youth under 18 outside clinical settings are scarce, limiting effective support development. The requirement for parental consent in participatory research poses ethical and logistical challenges, impacting the safety, well-being, and privacy of adolescent participants. This dynamic complicates the balance between adolescents’ rights to autonomy and privacy and parental duties to protect their children. This review aims to illuminate the ethical and methodological challenges in participatory research with TGD youth. Methods A systematic review of bibliometric databases from 2006 to 2022 was conducted, focusing on transgender and gender non-conforming identities, adolescence, qualitative and participatory research methods, and consent issues. This review was registered with PROSPERO in November 2022 (CRD42022368360). Results Of 3,794 articles initially identified, 291 met the inclusion criteria, and 48 were extensively reviewed. Research with TGD youth commonly faces ethical tensions including parental inclusion in the consent process, safeguarding participant safety and privacy, ensuring confidentiality, and creating environments that allow TGD youth to express themselves and feel empowered. Methodological challenges include engaging public and stakeholders, recruiting participants, data collection, and maintaining research integrity. Conclusion & Implications The literature on participatory research with young transgender and gender-diverse individuals reveals intricate and often conflicting issues related to consent procedures, power dynamics, and the researcher’s role. These findings are applicable in various legal and geographical contexts, providing insights that can guide practices globally. Key messages • Research reveals ethical dilemmas in participatory research with transgender young people, highlighting difficulties around consent and the need for tailored support. • Understanding the complexities of research ethics enables better support for transgender and gender-diverse young people during research.

In the past, researchers have inadvertently caused stigmatization of various populations, first by not involving community members and then through publishing negative findings. In contrast, participatory research, which is based on a partnership between researchers and those affected by the issue being studied, promotes the voice of those being researched. This essay highlights key principles, processes, complexities, and challenges of participatory research and outlines when participatory research is not appropriate. It also reflects on the training and skills of family physicians that make them especially suited to participatory research. Family physicians have established clinical partnerships with their patients and sometimes entire communities, are trained in patient-centered care-a good basis for community centered research-and are accustomed to working with uncertainty. In addition, they are frequently pragmatic, interested in questions arising from their patients and communities, and likely to respond well to community requests. The main challenges to participatory research are lack of funding, expertise, and time, which may improve as more funding agencies and universities support this approach to research.

Little recent data is available about people with visual impairments in France. This article presents the design process of an online survey aimed at providing a portrait of the life of the people with visual impairments, based on participatory research. Questions were determined and refined over several phases, including focus groups and a consensus process using the Delphi method. A total of 49 people participated in the project: people with visual impairments, relatives, professionals and researchers. The participatory design process resulted in a final survey that includes 191 questions about various topics. The value and challenges of participatory research are discussed. For example, the participatory nature of the project and its reach encouraged participants to stay involved even though the development process was time consuming. The data collected with the survey will be used to capture the diversity of people with visual impairments in terms of (dis)ability, needs and resources.

Participatory research, also referred to as patient and public involvement, is an approach that involves collaborating with patients affected by the focus of the research, on the design, development and delivery of research to improve outcomes. There are two broad justifications for this: first, that it enhances the quality and relevance of research, and second, that it satisfies the ethical argument for patient inclusion in decisions about them. This synergistic and collaborative effort, which bridges the divide between researchers and participants with the lived condition, is now a mainstream activity and widely accepted as best practice. Although there has been a substantial increase in the literature over the past two decades, little has been published on how participatory research has been used in inflammatory bowel disease [IBD] research and little guidance as to how researchers should go about this. With an increasing incidence and prevalence worldwide, combined with declining study enrolment in an era of perennial unmet need, there are a multitude of benefits of participatory research to IBD patients and investigators, including research output that is informed and relevant to the real world. A key example of participatory research in IBD is the I-CARE study, a large-scale, pan-European observational study assessing the safety of advanced therapies, which had significant patient involvement throughout the study. In this review, we provide a comprehensive overview of the benefits and challenges of participatory research and discuss opportunities of building strategic alliances between IBD patients, healthcare providers and academics to strengthen research outcomes.

This article is based on the idea that if we are witnessing an on-going shift towards the transnational phase of capitalism, this objective structural change should also be taken into account in higher education studies. In this sense, this article reflects the increased scholarly attention into the relationship between globalisation and higher education since the 1990s. The main purpose of this article is to contribute to these discussions by developing dialogue between global capitalism theories and the theory of academic capitalism. In order to achieve this, William Robinson's concept of the transnational capitalist class (TCC) will be amended to include also the informational fraction. Furthermore, the causal history of TRIPS (Agreement on Trade-Related Aspects of Intellectual Property Rights) will be used as an illustrative example of how transnational corporations have stimulated the emergence of academic capitalism at transnational level. First, I will discuss the theory of academic capitalism. Second, I will introduce and amend the concept of the TCC. Third, I will present my conclusions.

Academic capitalism is currently a widely studied topic amongst higher education scholars, especially in the United States. This paper demonstrates that the theory of academic capitalism also provides a fruitful perspective for analysing the restructuring of Finnish higher education since the 1990s, although with reservations. It will be argued that many reforms in Finnish universities since the 1990s, and especially in the early 2000s, have integrated Finnish universities more tightly with the new knowledge-based economy. As some recent empirical studies indicate, activities and practices related to academic capitalism remain, however, unevenly distributed among different disciplines, and workers in Finnish universities tend to experience increasingly contradictory demands.

Participatory action research represents the convergence of two intellectual and practical traditions, that of action research and participatory research. Although participatory action research is by no means uncontentious, it has become a familiar term to social research practitioners. However, in recent years critiques of Western epistemologies by sociologists of knowledge, feminists, post-colonialists and postmodern scholars present challenges for participatory action research in Africa. This article critically examines epistemologies that support and underpin participatory action research. It particularly interrogates the dominance of Western epistemologies in supporting models of participatory action research used in Africa and elsewhere, and explores spaces for indigenous epistemologies and Western epistemologies to be performed together within participatory action research processes.

We examine the rise of coaching within management education to support student learning. We question the assumption that faculty-student coaching (FSC) is beneficial and propose that there may be some limitations in the use of FSC that have yet to be adequately acknowledged and discussed in the literature. In particular, we propose that there is currently insufficient evidence to conclude that coaching can produce knowledge acquisition and therefore ask why we persist in the use of FSC when we have limited evidence of its efficacy in delivering a core education outcome. We suggest that the theory of academic capitalism provides a useful, critical lens through which to view the growing trend in FSC, identifying that FSC may be utilized as a method of increasing student satisfaction, perceptions of value for money and as a useful marketing tool for business schools competing for students. However, academic capitalism may also explain the use of coaching via its ability to enhance the skills and attitudes of students, providing outcomes that are valued by students, employers and governments. We conclude our essay by providing recommendations to mitigate these proposed dangers and consequently maximise the effectiveness of coaching as a development tool in management education.