Emergency care (from ambulance to emergency room) is focused on somatic care: fixing the body. When a patient with mental dysregulation who experiences ‘disproportionate feelings like fear, anger, sadness or confusion, possibly with associated behaviours’ (Van de Glind et al. 2023) does not get appropriate attention, this can result in the disruption of treatment and even psychological trauma upon trauma. To improve the emergency care process, the authors of this paper - health researchers and design researchers engaged in a project based on the experience-based co-design (EBCD) approach (Donetto et al. 2015; Bate and Robert 2007). EBCD is a method used to design better experiences in healthcare settings, in cooperation with (former) patients and healthcare professionals. The process of EBCD involves partnerships between stakeholders and the discovery and sensemaking of experiences through specialized methods to gain an understanding of the interface between user and service, to design new experiences (Bate and Robert 2007, 31). There is, however, an interesting challenge in bringing patients and care professionals together. In emergency care, patients depend greatly on their healthcare providers. The patients in this study had existing mental vulnerabilities and may have been traumatized by previous visits. We needed to enable these stakeholders to be equal partners with ownership and power, one of the characteristics of co-design in EBCD (Donetto et al. 2015). In this paper, we describe how we adapted and applied the EBCD method, with a focus on creating equal partnerships. We also reflect on the extent of our success and the diBiculties we encountered in attaining this objective.
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Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
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Background: Many intervention development projects fail to bridge the gap from basic research to clinical practice. Instead of theory-based approaches to intervention development, co-design prioritizes the end users’ perspective as well as continuous collaboration between stakeholders, designers, and researchers throughout the project. This alternative approach to the development of interventions is expected to promote the adaptation to existing treatment activities and to be responsive to the requirements of end users. Objective: The first objective was to provide an overview of all activities that were employed during the course of a research project to develop a relapse prevention intervention for interdisciplinary pain treatment programs. The second objective was to examine how co-design may contribute to stakeholder involvement, generation of relevant insights and ideas, and incorporation of stakeholder input into the intervention design. Methods: We performed an embedded single case study and used the double diamond model to describe the process of intervention development. Using all available data sources, we also performed deductive content analysis to reflect on this process. Results: By critically reviewing the value and function of a co-design project with respect to idea generation, stakeholder involvement, and incorporation of stakeholder input into the intervention design, we demonstrated how co-design shaped the transition from ideas, via concepts, to a prototype for a relapse prevention intervention. Conclusions: Structural use of co-design throughout the project resulted in many different participating stakeholders and stimulating design activities. As a consequence, the majority of the components of the final prototype can be traced back to the information that stakeholders provided during the project. Although this illustrates how co-design facilitates the integration of contextual information into the intervention design, further experimental testing is required to evaluate to what extent this approach ultimately leads to improved usability as well as patient outcomes in the context of clinical practice.
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Background: Many intervention development projects fail to bridge the gap from basic research to clinical practice. Instead of theory-based approaches to intervention development, co-design prioritizes the end users' perspective as well as continuous collaboration between stakeholders, designers, and researchers throughout the project. This alternative approach to the development of interventions is expected to promote the adaptation to existing treatment activities and to be responsive to the requirements of end users. Objective: The first objective was to provide an overview of all activities that were employed during the course of a research project to develop a relapse prevention intervention for interdisciplinary pain treatment programs. The second objective was to examine how co-design may contribute to stakeholder involvement, generation of relevant insights and ideas, and incorporation of stakeholder input into the intervention design. Methods: We performed an embedded single case study and used the double diamond model to describe the process of intervention development. Using all available data sources, we also performed deductive content analysis to reflect on this process. Results: By critically reviewing the value and function of a co-design project with respect to idea generation, stakeholder involvement, and incorporation of stakeholder input into the intervention design, we demonstrated how co-design shaped the transition from ideas, via concepts, to a prototype for a relapse prevention intervention. Conclusions: Structural use of co-design throughout the project resulted in many different participating stakeholders and stimulating design activities. As a consequence, the majority of the components of the final prototype can be traced back to the information that stakeholders provided during the project. Although this illustrates how co-design facilitates the integration of contextual information into the intervention design, further experimental testing is required to evaluate to what extent this approach ultimately leads to improved usability as well as patient outcomes in the context of clinical practice.
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This applied research project aims to generate a better understanding of the effects of heatwaves on vulnerable population groups in the municipality of The Hague, and suggests ways in which the municipality can help such groups to cope with these heatwaves. The research was performed as a cooperation between The Hague University of Applied Sciences (THUAS), the International Institute of Social Studies (ISS, Erasmus University Rotterdam) and the International Centre for Frugal Innovation (ICFI, Leiden-Delft-Erasmus Universities). Heatwaves constitute an important yet often overlooked part of climate change and their impacts qualify as disasters. According to the World Disasters Report 2020, the three heatwaves affecting Belgium, France, Germany, Italy, the Netherlands, Spain, Switzerland and the UK in the summer of 2019 caused 3,453 deaths.1 2020 was a new record year for the Netherlands because it was the first time that a heatwave included five days in a row during which the temperature reached 35 degrees or more. In addition, 40 degrees was measured for the first time, and periods of tropical days and nights are generally getting longer. Most importantly, this trend is accelerating faster than the climate change models are predicting.2 In addition, the COVID-19 pandemic is compounding the effect of heatwaves, as vulnerable individuals may be reluctant to seek cool spaces out of fear of infection. Already in 2006, the Netherlands ranked near the top of the global disaster index due to the number of excess deaths that could be attributed to the heatwave. In the same year, the EU published the first climate strategy in which heat is recognised as a priority. In 2008, the Netherlands developed its first national heat plan.4 The municipality of The Hague has a municipal climate adaptation strategy and has developed a draft local heat plan in the summer of 2021, which was published in February 2022 . This research was not meant to be and was not set up as an evaluation of the current heat plan, which has not yet been activated. At the level of municipalities and cities, the concept of urban resilience is key. It refers to “the capacity of individuals, communities, institutions, businesses, and systems within a city to survive, adapt, and grow no matter what kinds of chronic stresses and acute shocks they experience”. Heatwaves clearly constitute acute shocks which are rapidly developing into chronic stresses. In turn, heatwaves also exacerbate the chronic stresses that are already there, i.e. existing chronic stresses also lead to greater impact of a heatwave. In other words, there are negative interaction effects. Addressing these effects requires overcoming the silo approach to urban governance, in which different municipal departments as well as other stakeholders (such as the Red Cross, housing corporations, tenants’ associations, care organisations, entrepreneurs etc.) each address different parts of the problem, rather than doing so in an integrated and inclusive manner. The dataset for this study is archived in DANS Easy: https://doi.org/10.17026/dans-xeb-h8uk
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