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The hospital setting is often perceived as slow to change. While employee-driven approaches offer a promising alternative to traditional top-down methods, guidance is limited. This study provides a description and formative evaluation of an employee-driven working group (WG) approach to tailor ward-specific measures to improve care in the dying phase. The aim is to evaluate the WG process and offer practical insights for transferability to other hospitals.
Methods
Formative mixed-methods evaluation of a WG process to tailor ward-specific evidence-informed measures on 10 wards outside specialized palliative care at 2 German medical centers. To analyze factors relevant for the WG process, the Consolidated Framework for Implementation Research 2.0 was applied. Data included baseline evaluation (medical record analysis, staff survey and focus groups, informal caregiver interviews), WG protocols, and an online survey with WG participants.
Results
Multiprofessional WGs were established on all hospital wards, with an average of 7 meetings per ward within 1 year and 4 participants per meeting. Adapting the process to participants’ wishes and needs were crucial, particularly regarding the desired degree of external input. We identified 4 barriers (e.g. declining participation, institutional limits) and 7 facilitators (e.g. involvement of staff in leading positions, multiprofessional composition). The WGs tailored 34 measures, e.g. team meetings to improve communication within the team. Participants’ views were generally positive: 91% felt able to share their thoughts, 66% were satisfied with the outcome, and 77% would participate again.
Significance of results
The employee-driven approach was feasible and useful for tailoring ward-specific measures. However, integrating top-down elements proved to be beneficial. The identified barriers and facilitators provide insights for transferring an employee-driven approach to other hospitals to improve care in the dying phase outside specialized palliative care settings.
Clinical trial registration
The study was registered in the German Clinical Trials Register (DRKS00025405).
Expanding crop diversity is essential to address the imminent challenges of agriculture. This is especially true for organic farming, which relies on locally adapted species and varieties. Recently, participatory research approaches have emerged as effective means to support this endeavour. In this study, we collaborated with several stakeholders in the Lyon region, France, to evaluate three minor species related to common wheat (Triticum aestivum subsp. aestivum): einkorn (Triticum monococcum subsp. monococcum), emmer (Triticum turgidum subsp. dicoccum) and spelt (Triticum aestivum subsp. spelta (L.) Thell). First, we assessed the agronomic characteristics of each species, highlighting a distinction of einkorn that was associated with high tillering, high protein content, a long phenological cycle, small kernels and low relative yields. Second, we compared intra-species variabilities, revealing greater variation in emmer and spelt. Lastly, outcomes of the participatory approach, including testing adaptive methods and fostering collective learning, may interest other participatory research groups.
This article explores the potentials of intergenerational collaboration as a long-term research strategy for shifting social and political imaginaries around climate change. It brings together academics and youth researchers who began working together on the Climate Change and Me project in 2014, along with colleagues who joined them for a public panel, book launch and exhibition ten years later. Climate Change and Me was the first large-scale study of climate change education applying a child- and youth-framed methodology, and has led to numerous exhibitions, curriculum resources, digital platforms, and publications co-created with children and young people. This article gives voice to young people’s reflections on the impact of their involvement with this project a decade on, drawing on the transcript of a public panel conversation at the Design Hub Gallery in Naarm (Melbourne). It explores how young people’s early experiences as child researchers have intersected with political, social and educational change across time, while opening new conversations with intergenerational colleagues working in related areas of climate justice education, activism and research.
While normative theories of participatory democracy and practical experiences of participatory research share a common democratic commitment, the two fields have emerged and to date exist in isolation from each other. This article bridges this divide and asks what participatory democracy and participatory research can learn from one another. It argues that participatory democracy can learn how to realize its own democratic ideals within its research practice and participatory research can deepen its normative commitment by connecting its practices to a larger participatory vision. The article illustrates this by engaging with three examples in which participatory democracy researchers conduct participatory research projects. It finally reflects critically on how the shared participatory commitments of both fields can be realized within the neoliberal university embedded in competitive market economies.
To explore the perceptions, drivers, and potential solutions to consumption of unhealthy, ultra-processed foods (UPF) and foods high in fat, salt and sugar (HFSS), and their contribution to the double burden of malnutrition in adolescents living in urban slums, Kenya.
Design:
Qualitative participatory research, through Photovoice, group discussions and community dialogues. Inductive, thematic analysis was undertaken.
Setting:
Three major slums, Nairobi.
Participants:
Adolescents 10-19 years (n=102: 51 boys, 51 girls) and adults (n=62).
Results:
UPF/HFSS consumption emerged as a predominant theme on the causes of undernutrition and overweight/obesity and foods commonly consumed by adolescents. Adolescents described UPF/HFSS as junk, oily, sugary or foods with chemicals, and associated UPF/HFSS consumption with undernutrition, obesity, non-communicable diseases. They perceived UPF/HFSS as modern, urban, classy, appealing to young people, and minimally processed foods as boring, primitive, for older people, and those in rural areas. Individual-level drivers of UPF/HFSS consumption were organoleptic attributes (taste/aroma), body size/shape, illicit drug use, convenience, adolescents’ autonomy. Social environment drivers were peer-pressure and social status/aspirations. Physical environment drivers were UPF/HFSS availability and accessibility in the slums. Education on healthy eating and adverse effects of consuming UPF/HFSS, through existing structures (youth groups, school, community health strategy) was proposed as potential solution to UPF/HFSS consumption.
Conclusion:
UPF/HFSS were perceived as associated with poor nutrition and health, yet were preferred over unprocessed/minimally processed foods. Interventions to promote healthy diets beyond raising awareness are important, while address the underlying perceptions and drivers of UPF/HFSS consumption at individual-level, and social and physical food environments.
This paper, co-authored by two adult academics and three young researchers aged 11 to 16, investigates the authors’ collective experiences in a participatory research project about growing up multilingual with Chinese heritage and migration background, where race and racism emerged as key themes. Drawing on critical dialectical pluralism and the concept of “reflexivities of discomfort,” we explore how co-constructing research with children and young people can enrich the research process. Despite the intricate and often opaque nature of discussing racism, especially anti-Asian racism, with children from migration backgrounds, this study advocates for participatory research as a critical tool for uncovering these complexities, paving the way for more open and meaningful conversations. In collaboration with young researchers, we reevaluate the role of research and researchers in discussing racism, (de)construct children as experts of their racialized experiences, and imagine the future of researching racism with children through what we call “collective reflexivity”—a practice of open discussions that highlight young people’s positionalities, experiences, and insights. Through practices that protect individuality and value personal experience, our work makes a methodological contribution by offering “collective reflexivity” and co-authorship as a pathway that ensures children are not viewed as “representatives,” but valued for their positionalities, encouraging more engaged and critical conversations on race and racism with them.
The devastating impacts of the COVID-19 pandemic highlighted the missing voices of families and residents in long-term care (LTC) decision-making and policy processes. Family and resident councils constitute one method of raising these voices, but there is currently a gap in evidence of how to promote the effectiveness of these councils. We conducted five focus groups and two interviews with LTC home leaders, residents, family members, and advocates in British Columbia using a participatory approach integrating knowledge-users throughout the research process. Using a framework analysis, we found modifiable (communication, structure, recruitment/engagement, council leadership, culture/attitudes, and resources/supports) and non-modifiable factors (medical complexity of residents and short lengths of stay) affecting council effectiveness. We discuss strategies implemented by knowledge-users to address modifiable effectiveness factors and construct a preliminary tool (a 35-question survey) that operationalizes and identifies areas that can increase council effectiveness in practice to ensure that their voices are heard in LTC decision making.
This book offers a critical overview of participatory methods in health research with adolescents and youth. It introduces participatory methodology as an ethos and practice, before covering specific paradigms and methods, including participatory action research, community-based participatory research, co-design, co-creation, participatory design, peer research, youth as researchers, integrated knowledge translation, and youth-adult partnerships. Specific technologies are also covered, such as mobile apps and video games, sonification, photovoice, visual mapping, and Internet-based approaches. A guidebook to both theory and methods, it demonstrates technology's potential to drive impactful research and inclusive study design.
In the current polycrisis era, plant science, particularly when applied to agronomy, becomes instrumental: because our main substantial and renewable resource is plant biomass, many future solutions will depend on our ability to grow and transform plant material in a sustainable way. This also questions the way we conduct plant research and thus quantitative plant biology. In response to the increasing polarization between science and society, participatory plant research offers a pertinent framework. Far from moving away from quantitative approaches, participatory plant research builds on complexity associated with biology and situated knowledge. When researchers and citizens work together on societal issues, such friction becomes more fertile, quantitative questions become more complex, societal issues are addressed at their roots and outcomes often exceed that of top-down strategies. This article serves as an introduction to this ongoing bifurcation in plant science, using plant breeding as a key example.
Livestock farming is currently highly questioned and is considered by society to be one of the main precursors of climate change and innumerable environmental impacts. This social concern has marked a trend in public policies in Europe, promoting strategies to reduce greenhouse gas (GHG) emissions by controlling the carbon footprint of agri-food products. However, in certain regions, the perception of the main actors in the sector about the role that livestock farming plays in this fight against climate change and how new political trends point the way toward the sustainability of agrarian systems is still uncertain. In this study, the opinions of stakeholders of the agro-livestock sector on the role that extensive livestock farming plays in the current context of the fight against climate change and the demands for public policies to facilitate the adoption of mitigation practices were examined. A participatory research process through focus groups was used in this qualitative study. Specifically, five sessions were held at the beginning of 2022; the sessions were recorded, transcribed, and anonymized for further analysis. In these sessions, projective techniques were used, such as word association and sentence completion to understand stakeholders' perceptions of the role of extensive livestock farming in climate change. Brand mapping was conducted to determine the opinion on the profitability and GHG emissions of 10 livestock systems typical of the region and of eight quality labelling systems related to sustainability. Brainstorming was carried out to assess available practices for the adaptation of livestock farms and mitigation of climate change. Finally, there was an open debate regarding the demands for public aid for the implementation of mitigation practices. The word association technique identified concepts such as ‘Equilibrium’ in extensive livestock farming and concepts such as ‘Effects’, ‘Action’ and ‘Concern’ in climate change. For the term carbon footprint, the most mentioned concept was ‘ignorance’, and for common agricultural policy, the most mentioned term was ‘injustices’. The results of the brand mapping allowed us to determine the perception of the stakeholders regarding the profitability of the different extensive farm systems and on their GHG emissions, with the most extensive and traditional ones being perceived as the lowest emitters of gases but also the least profitable. For sustainable labels, stakeholders believed that labels contribute to profitability and lower GHG emissions. Strategies to adapt to climate change and reduce the impact of farms were focused on reforestation, grazing, and soil management, adjusting the livestock stocking rate and self-production of food on farms. The best mitigating practices proposed were the maintenance of the extensive livestock farming (4.69), improvement of accesses, livestock routes and roads (4.63), making and applying compost (4.50) and the simplified administrative procedures (5.00). In the prioritization of public aids, three categories were established based on the field of action: social/organizational measures (38 votes), economic measures (44 votes) and environmental measures (22 votes). The aid related to maintaining profitability and improving marketing, followed by aid to reduce bureaucracy and direct aid to extensive livestock farming, were identified as priorities. This study offers a detailed picture of how stakeholders in the agro-livestock sector see the role that extensive livestock farming plays in the fight against climate change. The best farm management practices and priority lines of public support that policy-makers can apply have been identified in this study and emanate directly from those who receive subsidies and make the decisions in their livestock farming to ensure their implementation more successful.
EDAC (Eating Disorders and Autism Collaborative) is an innovative project aiming to increase research capacity by supporting collaboration in the fields of eating disorders and autism. EDAC comprises four integrated workstreams to co-produce interdisciplinary research, directed by Autistic individuals with lived experience of eating disorders. Workstream 1 will outline best collaborative practices, informing the research network. Workstream 2 will use arts-based methodologies to set research priorities, with emphasis on the perspectives of underrepresented groups. Workstream 3 will support interdisciplinary collaborations to develop innovative research. Finally, workstream 4 will maximise knowledge mobilisation with the aim of reducing barriers to rapid incorporation of research into policy and clinical practice. A core aim of EDAC is to embed a neurodiversity-affirming culture within eating disorder research and to support the development of a new generation of researchers conducting innovative and meaningful research with the potential to improve clinical outcomes.
The chapter reviews approaches to decoloniality and critical evaluations of the relaunch of the civic university idea in the twenty-first century, and the risks of commodifying diversity and community links and objectifying communities in pursuit of a neoliberal agenda. In 2010 the Multilingual Manchester (MLM) project was launched as a model of non-linear, reciprocal partnership combining teaching, research and public engagement. It set up multiple partnerships with local service providers and community groups, a student volunteer scheme, digital resources and a policy engagement strand and created public spaces to engage with the city’s multilingualism. Ironically it was the crystalisation of a neoliberal university agenda that gave the initiative momentum: MLM was seen as a useful tool to market degree programmes by offering a unique student experience and employability prospects, a way to maximise impact (in 2014 and 2021 more than half of the relevant unit of assessment’s impact submissions were linked to MLM) and to demonstrate connections with the locality.
Science is a product of society: in its funding, its participation, and its application. This Element explores the relationship between science and the public with resources from philosophy of science. Chapter 1 defines the questions about science's relationship to the public and outlines science's obligation to the public. Chapter 2 considers the Vienna Circle as a case study in how science, philosophy, and the public can relate very differently than they do at present. Chapter 3 examines how public understanding of science can have a variety of different goals and introduces philosophical discussions of scientific understanding as a resource. Chapter 4 addresses public trust in science, including responding to science denial. Chapter 5 considers how expanded participation in science can contribute to public trust of science. Finally, Chapter 6 casts light on how science might discharge its obligations to the public.
This paper contributes to an increasingly critical assessment of a policy framing of ‘financial resilience’ that focuses on individual responsibility and financial capability. Using a participatory research and design process, we construct a ground-up understanding of financial resilience that acknowledges not only an individual’s actions, but the contextual environment in which they are situated, and how those relate to one another. We inductively identify four inter-connected dimensions of relational financial resilience: infrastructure (housing, health, and childcare), financial and economic factors (income, expenses, and financial services and strategies), social factors (motivation and community and family), and the institutional environment (policy and local community groups, support and advice services). Consequently, we recommend that social policies conceptualise financial resilience in relational terms, as a cross-cutting policy priority, rather than being solely a facet of individual financial capability.
As reproductive freedoms in the U.S. undergo significant rollbacks, vital reproductive health services — and the care teams delivering them — face escalating legal threats and complexity. This qualitative case-control community-based participatory research study describes how legal problem-solving supports for reproductive care teams serving mothers with opioid use disorder are protective for both patients and care team members. We describe how medical legal partnerships (MLPs) can promote Reproductive Justice and argue for wider adoption of care-team facing legal supports.
Participatory methods have become essential for research with Indigenous Arctic peoples. To understand how researchers use such methods, we conducted a scoping review of participatory action research (PAR)—a classic qualitative methodology—with Inuit communities. Although other systematic reviews exist on participatory methodologies in the Arctic, our scoping review is the only one focusing only on the Inuit.
We reviewed 11 empirical studies published between 2000 and 2019 in peer-reviewed journals. Most of them had been conducted with Canadian Inuit. Although the authors came from a variety of disciplines, the studies were mostly about the health and well-being of Inuit communities. The authors did not use the same definition of PAR, but their definitions did share some key components: Inuit participation, Inuit engagement and a goal of social change. There were also a variety of methodologies of research and forms of Inuit participation, although the photovoice method was frequent.
Scoping reviews are most often used in the natural sciences. This one was a challenge because we were using it in the social sciences and because it concerned PAR, an approach with different definitions and uses. A remaining question is how to assess such a method, either by peers or by other stakeholders.
This chapter begins by exploring the methodological challenges encountered when conducting a teacher expertise study, particularly those challenges that become more prominent when researching in the global South. It then presents a set of minimum requirements for an appropriate, ethical study of expertise in the South, also discussing a continuum of participation from non-participatory to fully participatory research, rather than seeing these as dichotomous. The chapter then summarises the design solution adopted in my own PhD study, including one preparatory stage and seven main stages. As well as discussing participant selection criteria, data collection and analysis procedures, the details of the eight participant teachers and their teaching contexts are also provided. Towards the end of the chapter, full details are given on the quantity and type of data collected, the varied outputs of the study – including the publication co-authored by the eight participant teachers – and the research questions that were investigated. The chapter concludes with a revised and updated overview of participant selection criteria for teacher expertise studies in all contexts worldwide, based on a review of studies conducted to date, supporting Palmer et al.’s (2005) call for multiple criteria selection, yet recommending somewhat different criteria to theirs.
User-oriented research is important in breeding improved genotypes, for developing and validating product concepts (mostly involving trait prioritisation), as well as evaluating breeding products in use situations (mostly involving participatory variety evaluation). This paper examines key aspects that enable cumulative learning in user-oriented research for root, tuber and banana (RTB) crop breeding. We reviewed empirical user-oriented studies on RTB crops published between 1996 and 2020. We examined the ability of user-oriented research to foster cumulative learning by examining four key aspects: spatial and temporal coverage; gender aspects; the range of traits considered and publishing practices as evident in reports and datasets. We conclude that user-oriented studies have received attention in RTB breeding but fall short of enabling cumulative learning. Substantial investments in methodology development and capacity are needed to bring greater coherence to this field and enable cumulative learning about user perspectives to iteratively increase the fit between improved genotypes and user preferences.
Outside of community-led design projects, most participatory design processes initiated by a company or organisation maintain or even strengthen power imbalances between the design organisation and the community on whose purported behalf they are designing, further increasing the absencing experience. Radical participatory design (RPD) is a radically relational answer to the coloniality inherent in participatory design where the community members’ disappointment is greater due to the greater expectations and presencing potential of a ‘participatory design’ process. We introduce the term RPD to show how research and design processes can be truly participatory to the root or core. Instead of treating participatory design as a method, a way of conducting a method, or a methodology, we introduce RPD as a meta-methodology, a way of doing any methodology. We explicitly describe what participation means and compare and contrast design processes based on the amount of participation, creating a typology of participation. We introduce ‘designer as community member’, ‘community member as designer,’ and ‘community member as facilitator’ models and provide characteristics for the meta-methodology of RPD.
This study analyses the experience and response of farmers within a multi-year collaborative research trial focused on the development of forage-based fallows in eight communities in the central Peruvian Andes. Quantitative data from a rural household survey were used to characterize farming household socioeconomic factors, livelihood strategies and soil and crop management practices of community members belonging to four participation groups with respect to the trials: 1) current participants near the end of the trial; 2.) those who participated early on, but dropped the trials after the first year; 3) those who participated in meetings but not directly in experiments; and 4) those who never participated meaningfully in the process. Furthermore, qualitative interviews of farmers in the four groups were used to examine trends and questions arising from the quantitative survey findings. Analysis of this mixed-methods dataset showed that better resource-endowed households (in terms of human and social capital, more livestock assets, higher levels of farm value production and income, and farm inputs) tended to be more likely to participate compared to households with lower levels of these variables. Our findings suggest that the differences in resource endowment among participation group households may be related to household life cycles, where access to resources change over time, reflecting the changing demography of a household. It was established that farm households with intermediate-age children, that is near the middle of a farm life cycle trajectory, are those with the most wherewithal to participate in trials and likely serve as examples and test cases for other farms with younger parents or older farmers with children moved away. Follow-up interviews indicated that farming households at either end of the farm life cycle trajectory may be using a ‘wait-and-see’ approach to the trials carried out by their neighbours who have more labour and other resources to deploy. In light of these findings, we suggest that participatory research should aim to ensure that the voices, challenges and opportunities of Non-participants are represented in the research process and experimental design. Additionally, greater consideration should be placed on understanding management by context issues in order to better target potential farming innovations such as improved fallows, at multiple levels, from the field to the household and to the community and beyond.