Background Stroke patients are often inactive outside of structured therapy sessions – an enduring international challenge despite large scale organizational changes, national guidelines and performance targets. We examined whether experienced-based co-design (EBCD) – an improvement methodology – could address inactivity in stroke units. Aims To evaluate the feasibility and impact of patients, carers, and staff co-designing and implementing improvements to increase supervised and independent therapeutic patient activity in stroke units and to compare use of full and accelerated EBCD cycles. Methods Mixed-methods case comparison in four stroke units in England. Results Interviews were held with 156 patients, staff, and carers in total; ethnographic observations for 364 hours, behavioral mapping of 68 patients, and self-report surveys from 179 patients, pre- and post-implementation of EBCD improvement cycles. Three priority areas emerged: (1) ‘Space’ (environment); (2) ‘Activity opportunities’ and (3) ‘Communication’. More than 40 improvements were co-designed and implemented to address these priorities across participating units. Post-implementation interview and ethnographic observational data confirmed use of new social spaces and increased activity opportunities. However, staff interactions remained largely task-driven with limited focus on enabling patient activity. Behavioral mapping indicated some increases in social, cognitive, and physical activity post-implementation, but was variable across sites. Survey responses rates were low at 12–38% and inconclusive. Conclusion It was feasible to implement EBCD in stroke units. This resulted in multiple improvements in stroke unit environments and increased activity opportunities but minimal change in recorded activity levels. There was no discernible difference in experience or outcome between full and accelerated EBCD; this methodology could be used across hospital stroke units to assist staff and other stakeholders to co-design and implement improvement plans.
Drawing upon ethnographic observations of staff working within a research laboratory built around research and clinical data from twins, this article analyzes practices underlying the production and maintenance of a research database. While critical data studies have discussed different forms of ‘data work’ through which data are produced and turned into effective research resources, in this paper we foreground a specific form of data work, namely the affective and attentive relationships that humans build with data. Building on STS and feminist scholarship that highlights the importance of care in scientific work, we capture this specific form of data work as care. Treating data as relational entities, we discuss a set of caring practices that staff employ to produce and maintain their data, as well as the hierarchical and institutional arrangements within which these caring practices take place. We show that through acts of caring, that is, through affective and attentive engagements, researchers build long-term relationships with the data they help produce, and feel responsible for its flourishing and growth. At the same time, these practices of care – which we found to be gendered and valued differently from other practices within formal and informal reward systems – help to make data valuable for the institution. In this manner, care for data is an important practice of valuation and valorisation within data-intensive research that has so far received little explicit attention in scholarship and professional research practice.
To celebrate 20 years of an epidemiological study, the South London Stroke Register, we collaborated with student artists and stroke survivors to create an exhibition of visual arts displayed at a series of events in 2015–16. This paper explores the expectations placed on researchers to engage with different publics, touching on current debates around institutional support and recognition. We critically reflect on the project process, identifying challenges and offering recommendations. We include the perspectives of the stroke survivors and the student artists, and examples of the artwork.
This paper describes an Experience-based Co-design (EBCD) project that aimed to increase patient activity within an acute stroke unit. We apply the concept of liminality to explore ways in which the EBCD process, a form of Participatory Action Research, may dilute or even dissolve social hierarchies and challenge assumptions about practices and constraints in this care setting, thereby opening up possibilities for transformation that enhances the therapeutic value of the space for patients and care providers alike. By occasioning a liminal phase of possibility for change, the work of one co-design group explored in detail here suggests that, in this process, the sociomaterial interactions involving patients, family members, staff, and the physical space are refashioned and re-inscribed in transformed ‘emplaced’ relationships of care.
The UK National Health Service (NHS) is changing. Consecutive UK industrial strategies have supported the shift from an NHS that provides free‐at‐point‐of‐delivery healthcare to one that also facilitates research. Said to promote healthcare’s triple aim of ‘better health, better healthcare, and lower cost’ (Wachter, 2016, 3), the digitisation of patient records is a core part in opening routine aspects of the health system to potential research. In this paper, we thematically analyse 11 policy documents and ask, how does the NHS discuss its decision to digitise patient records and what are the implications of such practices on the citizen? We document how (1) digitisation is presented as a collective endeavour for patients and NHS professionals, offering new possibilities for patients to participate in their own health and that of the population through research and, (2) digitisation contributes to the building of an efficient health system. Through this analysis we reflect on how discussions of digitisation present uncritically the potential of Electronic Health Records and big data analytics to improve care and generate wealth through research, and reconfigure patienthood, by placing research participation as a routine part of accessing NHS healthcare.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.