What fuels the research truck? Participatory health promotion research for sustainable change

As researchers, we rarely consider ourselves to be working in the freight business. Nonetheless, as reported in this issue by Gittings et al. (2022), in a study on adolescent health and development in South Africa, the research participants visualized their contribution as fruit that was carried onto a ‘research truck’ to be transported to other parts of Africa. The research truck is a remarkable metaphor that spurs a number of questions related to participatory research practices: What fuels the truck? Who sits in the driver’s seat? How is the cargo produced and who gets to decide what goes into the hold? Where is the cargo taken? Is it driven by demand or supply? Where does the truck go next? Similarly, as researchers, we should reflect upon our own roles: Do we envision ourselves as engineers, drivers, mechanics, as parts of the GPS system, or perhaps simply as friendly people helping out at the gas station? The image of the research truck is open to many interpretations, thus serving as an apt reminder of the questions and ambiguities that arise in participatory research practices. The articles of this special issue address these core issues of participatory research, such as empowerment, participation and ownership (Lewin, 1946; Freire, 1973; Chambers, 1994; Minkler and Wallerstein, 2003). Furthermore, the articles deal with new issues and concerns in participatory research, particularly related to questions of sustainability. Sustainability is an important concern in participatory health promotion research. This special issue is motivated by our interest in examining how participatory approaches can be adopted to further strengthen the long-term impact of health promotion research. Whereas participatory research is frequently heralded as a hallmark of health promotion, we rarely scrutinize our own participatory research practices and evaluate how (or if) they result in sustainable change. For some reason, we tend to reserve that kind of critical attention to the actions of practitioners, program developers and policymakers. Consequently, the writings on sustainability in health promotion research are almost exclusively focused on the sustainability of specific health promotion interventions [e.g. (Swerissen and Crisp, 2004; Shelton et al., 2018; Walugembe et al., 2019)] or more general ‘program sustainability’ [e.g. (Pluye et al., 2004; Stirman et al., 2012)]. Walugembe et al. point out that sustainability encompasses three main constructs: ‘continuation of health benefits for individuals after initial programme funding ends, continuation of programme activities within one or more organisations, and building of a community’s capacity to develop and deliver programmes’ (Walugembe et al., 2019). They argue for the importance of adopting theoretically informed approaches that guide the development, implementation and evaluation of interventions and address questions of sustainability throughout the process. We would add that participatory research plays an important role in achieving sustainability, but that we need to consider how, where and when participatory practices contribute to health, research and community outcomes (Wallerstein et al., 2020). The collection of papers presented in this issue is the result of an open call to scholars from around the world to submit articles on innovative participatory research in health promotion. The papers illustrate the varied scope of participatory research today, and when placed together they constitute a whole that is larger than the sum of its parts for two main reasons: First, the papers cross-fertilize one another in so far as the methodological, theoretical and/or ethical reflections of one paper shed new light on the others. Second, the collection allows for more general insights into the dilemmas and questions related to sustainability that arise in the intersection between the ideals and practices of participatory research. In the remainder of this editorial, we will present the individual papers and their contributions to the field, and next turn to the more general—and indeed, we believe, generalizable—questions related to sustainable change in participatory research. The papers in this issue can be divided into three overall categories: The first three papers are primarily concerned with the normative basis of participatory research, the next four papers provide methodological and conceptual inspiration for the use of participatory methods, e.g. in intervention development and in strengthening the research participation of disadvantaged groups, and the final two papers provide important reflections relating to the outcomes of participatory research processes and illustrate how these may be examined by remarkably different sets of methods. If participatory research is about creating sustainable change, one question begs to be addressed first: Which types of change and why? Based on a critical literature review, Harting et al. (2022) provide an overview and discussion of different categories of rationales for participatory research. More specifically, the article explores and categorizes underlying assumptions—or rationales—behind patient–public involvement (PPI). Identifying five different categories of rationales for PPI, the authors highlight how multiple, and in some cases perhaps contradicting, rationales shape PPI cases: the democratic, the consumerist, the transformative, the substantive and the instrumental rationales are not necessarily in conflict with one another, but they constitute varying starting points for participatory research and provide different sets of expectations and requirements. The article contributes a theoretical framework to explore and clarify diverse public, patient and stakeholder expectations and reasons for involvement. Thus the article emphasizes the necessity of reflection and transparency when designing and implementing (evaluations of) participatory research and practice. In a paper that discusses citizen science as a specific branch of participatory research, Pierce (2022) asks the pertinent question: does participatory research—inadvertently—serve to reinforce health inequities? The paper exemplifies an analysis based on transformative expectations (cf. Harting et al.’s categorization), where participatory research is required to not only give people a voice in the formation of research but also to contribute to societal change and proactively promote equity in health. This goes beyond well-known questions of equitable representation and inclusiveness in recruitment of research participants and relates also to issues of research design, oversight and dissemination. Pierce’s argument echoes the strong concern for social justice and equity in health that is reflected in several other papers in this issue. Nonetheless, in an accompanying letter Lauridsen (2022) questions if it is reasonable to expect that citizen science—and participatory research more generally—should have the intrinsic normative ambition of reducing health inequities. Thus, the first three papers of this issue raise important questions about the normative basis of participatory research and the very nature of the changes that we set out to create. In direct continuation of the discussions in the first section of the issue, Logie et al. (2022) show the potentials of working with the theories of Paolo Freire to emphasize critical awareness and social justice. The authors apply Freire’s concept of critical hope as a methodological strategy in participatory arts-based processes, and they demonstrate how this provides a fruitful framework for working empirically with empowerment and positive change among marginalized groups. The article draws on a community-based study with trans women of color in Toronto, Canada, with the objective of adapting and pilot testing an evidence-based HIV prevention intervention. During the participatory process, participants resisted the focus on HIV and biomedical risk factors, instead calling researchers to center journeys to self-love in contexts of social exclusion. In this way, the study addresses the ever-important issues in participatory research concerning involvement, participation and ownership, and it showcases a willingness to adjust and transform the intervention according to contextual needs and participant concerns. The study also provides concrete methodological inspiration in terms of its use of arts-based methods that were created in collaboration with community members. Thus, the paper illustrates nicely how sustainable outcomes of participatory research practices require a combination of methodological flexibility, accommodating the inputs and needs of research participants, and the use of theoretical concepts like critical hope as sensitizing devices that may help (de-)center the very focus and purpose of the research endeavor. In a paper that is also concerned with the use of visual methods to overcome barriers to research participation of disadvantaged groups, Sandholdt et al. (2022) report on their experiences using graphic facilitation. Graphic facilitation is a method of documenting experiences, opinions and outcomes in the form of drawings that are produced either live during an interaction or after the fact as a visual report. The method is not dependent on language ability or verbal skill. Graphic facilitation was chosen as a method to increase participation and empowerment of participants and the method was implemented based on principles of partnership, delegated power and citizen control. The study demonstrates the use of graphic facilitation as an engaging means of shifting the power balance in research with a marginalized group of people. Participatory methods are frequently used as a means of intervention development in health promotion. In some cases, this is embedded within structured designs, where interventions with predefined objectives and target groups are to be tested in a subsequent randomized trial, the assumption being that the research participation of stakeholders will increase the long-term sustainability of interventions. As indicated by the paper of Timm et al. (2022), this requires careful considerations of the balance between different types—or levels—of involvement at various stages of the research process. The authors highlight the need to document the processes of participatory intervention development and to be transparent about the changes and decisions made along the way. Adopting the language of co-creation, the authors present the challenges and learnings that arose during a yearlong process of intervention development that involved women with prior gestational diabetes mellitus, their family members and health care professionals. This demonstrates the importance of including a wide range of stakeholders in participatory processes but also points toward the volume of resources (including a substantial amount of time) that is required, even if it may not always be available. The paper by Grabowski et al. (2022) describes and illustrates a specific methodology for incorporating families in participatory research; i.e. participatory family workshops. The authors suggest that the concept of shared family identity is a useful guide for the management of chronic diseases as this may help us better understand adherence, in that the shared understanding between clinician and patient may not be sufficient without accounting for shared family identity. This is demonstrated through a description of three specific projects: Families living with type 2 diabetes, family-based intervention for childhood obesity and family experience of a child living with type 1 diabetes. In addition to demonstrating the value of family workshops for uncovering shared (and sometimes not shared) family identity, the paper provides guidance on how to run participatory family workshops and exemplifies their outcomes in terms of contributions to intervention development as well as unique insights in family dynamics related to health and illness. The final two papers of the issue provide reflections on the outcomes of participatory research, and in combination, they demonstrate that such outcomes can be examined through radically different methodological approaches, each of which hold their own potentials and limitations. In the paper by Gittings et al. (2022), we encounter the image of the research truck, which is included as part of mural illustration produced by a group of adolescent research participants who were invited to reflect upon their participation in 12 years of health and development-related research. They do so through a combination of song, theater, visual methodologies and semi-structured interviews. Like the papers of Sandholdt et al. and Logie et al., the paper demonstrates how arts-based participatory methods provide a refreshing alternative to the mainstream verbal and/or written medium of scientific methodology and communication. In addition, the paper adopts a long-term perspective which is quite rare in health promotion research and which serves, again, as a reminder of the amount of time and effort that goes into participatory research processes. When it comes to evaluating the outcomes of participatory research, the arts-based methods provide a culturally sensitive means of conveying the experiences of research participants. In this case, the young people emphasized how their participation in research was associated with experiences of unity, social support, empowerment and contributions to socio-political change at a larger scale. As Gittings et al. point out, the participants depict their involvement in research as something that can be compared to a support group while also creating something of value that can be transported to other contexts. It remains an open question, however, whether or not participatory research results in improved and sustained health outcomes. The paper by Song et al. (2022) provides a detailed account of the process through which a quantitative evaluation tool was developed to assess Seoul’s community-based participatory health program ‘Building Healthy Communities’. This program is based on collaboration between local health centers and communities and is now present in many parts of South Korea. Documentation of the outcomes of such programs is always a challenge within health promotion, and the article contributes to this discourse by showing how a quantitative measurement tool can be developed based on participatory processes and subsequently tested for its validity. Even though the two papers in this section adopt different methods they share a commitment to participation through all stages of the research process, including the evaluation of outcomes. As Heo et al. point out, empowerment and social capital may serve as explanatory mediators between participatory processes and health outcomes. Nonetheless, we might need an even broader set of methods to assess whether or not—and just as importantly how—improved outcomes may be sustained in the long run. As demonstrated by the papers in this issue, participatory research may play an important role in ensuring sustainability in health promotion, but it is certainly not a panacea. Each of the papers attests to the challenges of doing participatory research and the questions and methodological choices that need to be addressed along the way. Swerissen and Crisp reminds us that ‘The aim of health promotion is to produce intervention effects that may be sustained over time’ (Swerissen and Crisp, 2004), but they also caution that this expectation is not always realistic or even warranted. We might need to adjust our expectations to the specific contexts and circumstances where the research is conducted and consider if we should aim for sustainability at a particular organizational level, e.g. in the health promotion capacity of a specific community, in the possibilities for implementing of a particular intervention, or in the health outcomes that we aspire to promote. Sometimes, it might be a goal in itself to create the conditions for sustained research participation over a longer period of time. But what does it take to establish sustainable change based on participatory research processes? As indicated by the three categories of papers in this issue, we need to deal with three interrelated dimensions. First, we must be specific and transparent about the normative basis of our work and the specific aspirations of change that motivate our research. Harting et al. provide us with a framework for this kind of reflection and each of the other papers in this issue may serve as examples of the variety of research objectives that are pursued in participatory health promotion. For instance, Timm et al. engage with stakeholders to develop an intervention in a manner that is suitable for a subsequent randomized trial and an overall aim of preventing type 2 diabetes in a high-risk population. In comparison, the research participants in the study reported by Logie et al. resisted biomedical and pathologizing discourses in HIV prevention and decentered the very focus of the research toward critical hope. Second, we need to be flexible, responsive and creative in our methodological and conceptual approaches. Even if the papers provide methodological inspiration—and even some guidance as in Grabowski et al.’s paper on family workshops—participatory research is not a discipline of cookbook methodology. Three papers in this issue provide examples of the potentials of arts-based and visual methods, while also showing very clearly the need to work in ways that are attuned to specific groups of research participants (Logie et al., Gittings et al., Sandholdt et al.). Indeed, if we are to empower and sustain the capacities that are created in the very process of participatory research, we are required to adjust our research methods continuously while paying careful attention to the opportunities for participation that are created along the way, for whom and with what results. Simultaneously, and perhaps even more importantly, we need to be equally adaptive when it comes to positionality, power balances and levels of participation [cf. (Arnstein, 1969)]. Even if all contributors to the issue subscribe to participatory ideals, it is evident that the power balance in participatory research is highly dynamic and may shift in the course of research processes. In fact, this dynamic appears to be a prerequisite for participatory research to achieve sustainable results. Finally, and perhaps most importantly, we need to strengthen our attention to the outcomes and longer-term impact of participatory research processes. This requires a rich methodological repertoire—from arts-based approaches (cf. Gittings et al.) to the development of quantitative evaluations tools (cf. Heo et al.)—which remains participatory at its core while allowing us to learn from our efforts, our failures and successes. Outcome measures need not be confined to direct effects on health and well-being but should help us ensure a high level of alignment between our own normative aspirations, our methodologies of participation and the changes we achieve. Indeed, equity often lies at the heart of long-term ambitions of participatory health promotion research. Yet, we need to work on instruments and outcome measurements that are suited to document and evaluate the process of reaching such goals. And we need in-depth work on the assessment of the reliability of such measures (Sandoval et al., 2012). An important dilemma occurs when we are expected to pursue predefined research objectives, e.g. reflecting the aims of research funders, while being committed to pursuing the wishes and input of research participants that may lead in other directions. Several contributors to this issue point to the paradox that funders increasingly ask for the inclusion of participatory approaches, while not necessarily providing the necessary timeframe and resources, let alone sufficient flexibility in terms of research objectives and intervention contents. We began this editorial in a participatory spirit with the image of a ‘research truck’ crafted by a group of young research participants. This stimulated a set of questions about the process of research, about the production and transportation of research ‘fruit’, and about our own role as researchers. What we learn from the papers in this issue is that the research truck must be fueled by ongoing reflexivity, adaptation and transparency as concerns our ideals, our methodological and conceptual approaches, as well as the outcomes of our work. We might—occasionally—place ourselves in the driver’s seat, but we must never assume control. We would like to thank the contributors, the and the editorial for this The is by and research the of which is by a from the This paper was as part of a by a and research the of which is by a from the The funders role in part of this

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