Search Results (158)

Background: Diagnosing physical and mental health issues in individuals with profound intellectual and multiple disabilities (PIMD) often proves challenging, as these patients are unable to speak for themselves. Caregivers’ tacit knowledge (TK) refers to interpreting non-verbal signs, and is difficult to communicate with physicians. As limited research exists on physicians’ perspectives, we aimed to explore how intellectual disability physicians (ID physicians) perceive and value caregivers’ TK. Methods: Semi-structured interviews with ID physicians (n = 10), focusing on their perceptions and experiences with caregivers’ TK in medical care for people with PIMD, were analyzed thematically with an interpretive approach to identify key patterns and insights. Results: ID physicians perceived caregivers’ TK as a critical ability to pick up subtle signs and irregularities or as a deep sensing something is wrong, with the latter being more difficult to communicate. They understood the importance of TK for diagnostic cues and of collaborative relationships to explicate TK. Conclusions: We describe how integrating caregivers’ TK with medical knowledge relies on trust and partnership. Moreover, we discuss how to overcome communication barriers and to improve medical care in co-production with caregivers in order to enhance the physical and mental well-being of people with PIMD. Full article

Cardiovascular disease (CVD), diabetes, and obesity pose major public health challenges in the United Arab Emirates (UAE), contributing substantially to morbidity, mortality, and healthcare expenditure. Despite progress in expanding access and service delivery, Health Quality Management (HQM) practices remain constrained. This study represents one of the first comprehensive, co-productive efforts to evaluate and strengthen HQM for CVD, diabetes and obesity in the UAE. Using a sequential, multi-phase design, it integrates evidence synthesis with the active engagement of interest groups to bridge gaps between research, policy, and practice. Phase 1 involves a scoping review to establish an evidence base on existing HQM practices and system-level challenges. Phase 2 conducts mapping and interviews with health professionals, policymakers, and patients to capture contextual insights. Phase 3 synthesizes findings to identify critical gaps, opportunities, and emerging research questions that can guide future inquiry. Phase 4 convenes consultative and consensus-building workshops to co-produce actionable recommendations and facilitate knowledge translation and exchange among health authorities, academic institutions, and other interest groups. Guided by the Institute of Medicine’s quality domains, the Donabedian model, and WHO quality indicators, this study situates HQM within the UAE’s ongoing shift toward value-based healthcare. The expected outcomes include the identification of key barriers to and facilitators of effective HQM, the formulation of context-specific recommendations to strengthen performance and coordination, production of knowledge translation outputs and the generation of new research priorities, thus contributing to achieving UAE Vision 2031 and global NCD targets. Full article

Extreme climate events like droughts and floods are creating urgent challenges for sectors such as Agriculture or water management. Effective adaptation requires stakeholder collaboration, supported by stakeholder analysis (SA) methods, which are still evolving in environmental management. We briefly reviewed examples of recent existing systematic evidence syntheses on SA across different domains. This highlighted several SA challenges, including the lack of transparent, common methods—particularly for climate-induced extreme events—and weak links between SA results and policy or practice. We then present a case study that illustrates these challenges and suggests ways to address them. Cooperating with a local network organisation, the Living Lab Schouwen-Duiveland (LAB), we conducted a case study on the island of Schouwen-Duiveland (NL), which is trying to adapt to drought. Applying a novel stakeholder analysis method, the “Rings of involvement”, which enables the visualisation of stakeholders’ levels of affectedness regarding the issue, we were able to identify and categorise the stakeholder network in a systematic manner. We identified stakeholder groups, such as “Implementers”, who are not yet in the network but likely hold key practical knowledge to address local-regional climate adaptation. This calls for a better institutionalisation of and a more dynamic approach to SA in the local climate change adaptation practices. Based on our case study, we suggest that future studies could explore under which conditions a network organisation (such as the LAB) acts as a dynamic platform for facilitating stakeholder knowledge co-production. Full article

Background: Parkinson’s is among the fastest-growing neurological disorders, characterised by motor and non-motor symptoms that affect daily function and quality of life. With no cure, sustainable management strategies are essential. Self-management is a key component, enabling people with Parkinson’s to actively manage symptoms, treatment, and lifestyle, reflecting the wider long-term conditions (LTCs) approach to improving outcomes and well-being of people affected by these conditions. However, more than half of people living with Parkinson’s (PwP) report difficulties in engaging with self-management, often due to limited knowledge, confidence, or access to tailored interventions. Aims: This paper explores the theoretical underpinnings, key drivers, and current evidence base for self-management in Parkinson’s. It examines the relevance and limitations of applying LTC models to a progressive and highly individualized condition such as Parkinson’s. Despite global guideline recommendations, self-management support remains a significant unmet need. While self-management has the potential to improve adherence, symptom control, and activity levels, uncertainties remain about what constitutes effective, meaningful support. There is a need for a nuanced, person-centered approach embedded within integrated care systems. Conclusions: To date, self-management has not demonstrated sustained benefits for PwP, in part due to limitations in how current models are conceptualized and delivered. This paper highlights the challenges of existing approaches and proposes a new framework that enables and empowers PwP and their support networks to live well with Parkinson’s. Rooted in partnership, enablement, and co-production, the proposed model promotes the development of personalized toolkits of strategies that help individuals navigate and mitigate the challenges of life with Parkinson’s. This reframing has important implications for future research, clinical practice, and policy. Full article

The medical treatment of people with innate Variations of Sex Characteristics (VSC) and intersex individuals remains a contested ethical field, where personal narratives have emerged as strategic and epistemological tools. This article examines how such narratives challenge entrenched medical authority, resist pathologizing models of care, and shape evolving legal and ethical frameworks. Using a reflective, interpretive approach grounded in thematic analysis of publicly available cases, we trace narrative interventions across two domains: as medical evidence in clinical contexts and as testimony in policy and legal advocacy. Examples include public protest, contested collaborations with medical professionals, and participation in legislative debates. These accounts not only document the harms of non-consensual medical interventions but also reconfigure definitions of legitimate knowledge, positioning lived experience as counter-expertise. In doing so, they disrupt traditional hierarchies of authority and contribute to the co-production of alternative visions for intersex healthcare and rights. While narrative mobilization can catalyze significant institutional change, it also entails emotional and ethical burdens for those repeatedly called upon to share their experiences. We argue that storytelling is not merely an accessory to reform but a foundational mechanism for advancing medical ethics, influencing policy, and expanding human rights protections. Full article

This paper outlines the implementation and core results of a combined archaeological, historical, and ethnographic study of the histories of well construction and water management among Boran, Gabra, and Rendille pastoralists in arid and semi-arid areas of Northern Kenya and Southern Ethiopia. Co-developed with representatives from different local communities from the outset, this project sought to document the spatial distribution of different types of hand-dug wells found across the study areas, their associated oral histories and, if possible, establish through archaeological means their likely date of initial construction. Concurrent with addressing these academic objectives, this project aimed to train a cohort of local heritage stewards in archaeological, historical, and ethnographic data collection and interpretation, equipping them with the necessary skills to monitor sites of heritage value and further record additional elements of the tangible and intangible heritage of the study areas. This paper discusses the archaeological work that the community trainees participated in, the strategies developed with them to create wider awareness of this heritage, and its implications for identifying ways to ”weather” climate change in the future. Full article

This article presents the results of a participatory urban diagnosis conducted in District 2 of La Paz, Bolivia, as part of an educational cooperation project aimed at exploring the spatial and symbolic dimensions of urban insecurity. Drawing on feminist and intersectional frameworks, this research combined participatory action methods, digital surveys, and collective mapping to identify patterns of fear and exclusion in public space. The analysis revealed significant disparities in how insecurity is perceived and experienced by different social groups—especially women, Indigenous peoples, and LGTBQ+ individuals—highlighting the importance of spatial configuration, social presence, and care infrastructure in shaping everyday urban life. The project also served as a pedagogical innovation, integrating architecture students into a process of civic engagement and co-production of knowledge. The resulting ‘Map of Gender Insecurity’ contributed to local planning efforts through the “Seguras, No Valientes” initiative. While the limited representation of some groups restricts statistical generalization, the approach offers a replicable model for linking research, education, and public action in pursuit of more inclusive and safer cities. Full article

Integrated multidisciplinary care is recognised as essential for people living with motor neurone disease (PlwMND) and their families. The values underpinning integrated care, such as person-centredness, respect, empowerment, and co-production, are central to delivering meaningful and comprehensive support. Trust is an essential yet often overlooked element of effective person- and family-centred integrated care, particularly for PlwMND. While specialist multidisciplinary MND clinics represent the benchmark for evidence-based care, many PlwMND and their families depend significantly on local and community-based support services to maintain quality of life. Trust directly influences their engagement with these services and the continuity of care provided. Trust enables understanding of personal priorities and how they change as the disease progresses, ultimately allowing for person-centred care to happen. Trust is necessary to enable service co-production, which is a strong value of integrated care. Research highlights seven key domains of support essential to PlwMND and their carers: practical, social, informational, psychological, physical, emotional, and spiritual. Effective integrated care requires strong relationships built upon trust, shared decision-making, respect for individuality, and clear communication. Furthermore, due to the rapidly progressive nature of MND, care priorities and perceived symptom burdens may shift significantly over short periods, making flexible, temporally sensitive approaches critical. A dynamic, inclusive model of decision-making that fosters autonomy within and regular co-review of needs is recommended. This perspective paper examines how person- and family-centred integrated care is currently being delivered, what is working well, and how these practices can be further strengthened to enhance the care experiences of PlwMND, their families, and the health and social care providers involved. This paper builds on both theoretical knowledge and clinical experience to offer our perspective on the critical role of trust in co-producing integrated care for PlwMND. It brings together the voices of clinicians and researchers, alongside those with lived experience of MND. We propose a diagram of care that embeds the core values of integrated, person-centred care within the specific context of MND. Our aim is to enhance collaborative practices, strengthen cross-sector partnerships, and ultimately improve the care experiences for professionals, PlwMND, and their families. Full article

This paper outlines the development and delivery of a novel, collaborative, co-production approach to incorporating lived experience in the development of policy and practice in the area of domestic abuse. “SEEKERS” (Sharing Experience, Expertise and Knowledge for Effective Responses and Support) is an initiative which brings together victims and advocates, police, practitioners and researchers as equal partners. It creates opportunities for them to share their experiences, expertise, and knowledge, so that others can learn from these and use this learning in addressing domestic abuse-related issues more effectively. Throughout this paper, we discuss some of the challenges encountered in developing and delivering activities and how these were addressed. Notable benefits of the approach will be highlighted, as indicated by feedback from those involved in a range of capacities, including police and law enforcement practitioners, policy makers, councillors, service providers, support services, victim advocates and survivors of domestic abuse. It is hoped that this paper will contribute to ongoing discussions regarding the ways in which different agencies and stakeholders can work together more effectively and how we can create methods and spaces to support meaningful interaction, collaboration, and co-production with victims. Full article

Addressing environmental challenges requires the inclusion of local communities with relevant knowledge of the social–ecological system in which they are embedded, in addition to using transdisciplinary approaches that are critical to the co-production of successful and sustainable environmental solutions. A qualitative methodology was used to examine stakeholders’ views of decadal changes in Ria de Aveiro, a coastal lagoon on Portugal’s Atlantic coast. Seven focus groups were conducted, which included 42 stakeholders from coastal parishes, in order to obtain identical geographical representation with a study conducted a decade ago. Participants represented a diverse sample of groups interested in or affected by management options and activities in the lagoon system and were asked to reflect on the main changes that occurred over the last decade. Positive changes reflected an increase in the levels of environmental awareness, a positive trajectory of the environmental status of Ria de Aveiro, and a decrease in illegal fishing activities. Persisting concerns referred to the lack of an efficient management body for Ria de Aveiro, pressures related to changes in the hydrodynamic regime of the lagoon, the disappearance of native species and increase in invasive alien species, the abandonment of traditional activities (e.g., harvesting of seagrass and seaweed, salt production, agriculture in lagoon margins, and artisanal fishing), and the degradation and lack of maintenance of salt pans. Our findings highlight the importance of longer-term transdisciplinary and social–ecological research and illustrate how stakeholder views regarding the shortfalls of the movement towards the integrated management of ecosystems remain. Full article

The growing frequency and severity of climate-induced disasters—such as floods, heatwaves, droughts, and wildfires—pose significant threats to sustainable development worldwide. Integrating Climate Change Adaptation (CCA) and Disaster Risk Reduction (DRR) has emerged as a strategy imperative for enhancing societal resilience and protecting developmental gains. This review synthesizes the current knowledge and practice at the intersection of CCA and DRR, drawing on international frameworks, national policies, and local implementation strategies. We assess the role of the Sendai Framework for Disaster Risk Reduction (2015–2030), the Paris Agreement, and the 2030 Agenda for Sustainable Development in promoting policy coherence and multi-level governance. Particular attention is given to the effectiveness of Nature-Based Solutions (NBS), Ecosystem-Based Adaptation (EbA), and community-based approaches that address both climate vulnerabilities and disaster risks while delivering co-benefits for ecosystems and livelihoods. Case studies from regions highly exposed to climate-related hazards, including the Global South and Europe, illustrate how integrated approaches are operationalized and what barriers persist, including institutional silos, limited financing, and data gaps. For example, Bangladesh has achieved over a 70% reduction in flood-related mortality, while Kenya’s drought-resilient agriculture has increased food security by 35% in affected regions. The review highlights best practices in risk-informed planning, participatory decision-making, and knowledge co-production, emphasizing the need for inclusive governance and cross-sector collaboration. By critically examining the synergies and trade-offs between adaptation and risk reduction, this paper offers a pathway to more resilient, equitable, and sustainable development. It concludes with recommendations for enhancing integration at the policy and practice levels, supporting both immediate risk management and long-term transformation in a changing climate. Full article

Research about the lived experiences of asylum-seeking and refugee youth can evoke powerful emotions for those involved. Young people who escaped perilous situations often bear strong emotions linked to their experiences of migration and displacement, as well as their encounters with disorientation, insecurity, isolation, discrimination and racism in unfamiliar contexts in the host society. Such emotions and emotionally charged places can be challenging to work with as researchers and require reflexive and situated methodological and ethical judgements. This paper investigates the emotional complexities of fieldwork with vulnerable young people by reflecting on (dis)comfort and discusses how to negotiate these issues with care and consideration. It draws from qualitative participatory and creative fieldwork experiences using story mapping, photovoice, walk-along and community theatre approaches in Amsterdam, Brussels, Leipzig and Newcastle-Upon-Tyne. It reports on a range of critical ethical and methodological issues that arose in our work that address meaningful relationships, reciprocity and trust, understanding the field, positionality and reflexivity, and challenges around the co-production of knowledge and leaving the field. Throughout, the paper flags various complex and, at times, ambiguous ethical and methodological issues that emerged throughout the research process and argues for research approaches that are sensitive to the contextual and multi-faceted nature of investigating young refugees and asylum seekers in European cities. Full article

The general aim of this paper is to analyse theoretical perspectives on ecotourism, co-production, and co-management, seeking to understand how these approaches interact and promote the sustainability of natural food resources and sustainable management practices. The methodology adopts a qualitative approach with exploratory and descriptive objectives, utilising a Systematic Literature Review (SLR) to identify and examine the key studies related to the subject. The main findings indicate that ecotourism fosters biodiversity conservation, which sustains local food practices and provides significant economic benefits for local communities through co-production and co-management between stakeholders. The community emerges as a principal active resource in planning and management processes by creating opportunities for environmental education; integrating local knowledge and experiences to develop a unique, multidimensional adaptive capacity; and promoting system regulation. Moreover, the analysis of the examined works highlights the importance of environmental education programmes, flexible institutions open to dialogue with the community, and the equitable distribution of benefits. Lastly, a framework is presented that depicts the relationship among ecotourism, co-production, co-management, and socio-ecological resilience, based on five premises. This framework proposes a holistic approach to achieving socio-ecological resilience in food practices and the sustainable management of resources. Full article

Polar research was especially affected by the COVID-19 pandemic because of its reliance on travel for remote fieldwork, large-scale scientific infrastructure, ecologically stressed environments, and elevated health risks to remote communities. In this study, we seek to understand how the polar science community responded to these challenges. Our data employ formal documentary evidence from the U.S. National Science Foundation Office of Polar Programs (OPP) and semi-structured interviews with 21 academic polar scientists based in the United States. Combining on-the-ground experiences with real-time responses from a leading federal funding agency reveals impacts and highlights opportunities to support polar research and researchers in the coming years. Polar researchers and OPP were often able to respond to challenges plastically: increasing support for community engagement and onsite staffing, switching methods, pivoting to archival work, or building new theoretical or experimental capacity. That said, pandemic disruptions brought known problems in the field to the fore, such as the investments in time and other resources needed for knowledge co-production and fieldwork. Individual and policy-level strategies to address those problems point the way toward sustainable polar science, including recognition of the multiple methodologies and people needed for successful work; incorporation of technologies that enhance scientific capacity while expanding access and inclusion; and attention to career development, especially for early-career and community collaborators. Full article

Background: Health behavior consultations support self-management if delivered by skilled practitioners. We summarize here the results of a collaborative training intervention program delivered to health and care practitioners working in a remote-island context. The program was designed to build confidence in the implementation of communication and behavior change skills and to sustain their use in work settings. The setting for the behavior change training program was the South Atlantic island of St. Helena, a remote low-middle-income country which has a population with high levels of obesity and a prevalence of long-term conditions. Objectives: We aimed to increase knowledge, confidence, and implementation of behavior change techniques (BCTs) and communication skills of health and social care staff through delivering and evaluating training using the MAP (Motivation, Action, Prompt) behavior change framework. A successful training intervention could ultimately improve self-management and patient health outcomes. Methods: Co-production with onsite representatives adapted the program for local delivery. A two-day training program was delivered face-to-face to 32 multidisciplinary staff. Pre- and post-intervention and 18-month follow-up evaluation assessed reactions, learning and implementation using multiple methods, including participant feedback and primary care patient reports. Results: Positive reactions to training and significant improvement in confidence, perceived importance, intention to use and implementation of BCTs and communication skills immediately post-training and at long-term follow-up were observed. Patient reports suggested some techniques became routinely used. Methodological difficulties arose due to staff retention and disruption through the COVID-19 pandemic. Conclusions: The delivery of health behavior change training can be effective in remote contexts with sustainable impacts on healthcare. There are challenges working in this context including staff continuity and technological reliability. Full article