Using co-production to increase activity in acute stroke units: the CREATE mixed-methods study

BackgroundStroke is the most common neurological disability in the UK. Any activity contributes to recovery, but stroke patients can be inactive for > 60% of their waking hours. This problem remains, despite organisational changes and targeted interventions. A new approach to addressing post-stroke inactivity is needed. Experience-based co-design has successfully initiated improvements for patients and staff in other acute settings. Experience-based co-design uses observational fieldwork and filmed narratives with patients to trigger different conversations and interactions between patients and staff to improve health-care services.ObjectivesTo complete a rapid evidence synthesis of the efficacy and effectiveness of co-production as an approach to quality improvement in acute health-care settings; to evaluate the feasibility and impact of patients, carers and staff co-producing and implementing interventions to increase supervised and independent therapeutic patient activity in acute stroke units; and to understand the experience of participating in experience-based co-design and whether or not interventions developed and implemented in two units could transfer to two additional units using an accelerated experience-based co-design cycle.DesignA mixed-methods case comparison using interviews, observations, behavioural mapping and self-report surveys (patient-reported outcome measure/patient-reported experience measure) pre and post implementation of experience-based co-design cycles, and a process evaluation informed by normalisation process theory.SettingThe setting was two stroke units (acute and rehabilitation) in London and two in Yorkshire.ParticipantsIn total, 130 staff, 76 stroke patients and 47 carers took part.FindingsThe rapid evidence synthesis showed a lack of rigorous evaluation of co-produced interventions in acute health care, and the need for a robust critique of co-production approaches. Interviews and observations (365 hours) identified that it was feasible to co-produce and implement interventions to increase activity in priority areas including ‘space’ (environment), ‘activity’ and, to a lesser extent, ‘communication’. Patients and families reported benefits from participating in co-design and perceived that they were equal and valued members. Staff perceived that experience-based co-design provided a positive experience, was a valuable improvement approach and led to increased activity opportunities. Observations and interviews confirmed the use of new social spaces and increased activity opportunities. However, staff interactions remained largely task focused, with limited focus on enabling patient activity. Behavioural mapping indicated a mixed pattern of activity pre and post implementation of co-designed changes. Patient-reported outcome measure/patient-reported experience measure response rates were low, at 12–38%; pre- and post-experience-based co-design cohorts reported dependency, emotional and social limitations consistent with national statistics. Post-experience-based co-design patient-reported experience measure data indicated that more respondents reported that they had ‘enough things to do in their free time’. The use of experience-based co-design – full and accelerated – legitimised and supported co-production activity. Staff, patients and families played a pivotal role in intervention co-design. All participants recognised that increased activity should be embedded in everyday routines and in work on stroke units.LimitationsCommunication by staff that enabled patient activity was challenging to initiate and sustain.ConclusionsIt was feasible to implement experience-based co-design in stroke units. This resulted in some positive changes in unit environments and increased activity opportunities for patients. There was no discernible difference in experiences or outcomes between full and accelerated experience-based co-design. Future work should consider multiple ways to embed increased patient activity into everyday routines in stroke units.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 35. See the NIHR Journals Library website for further project information

Exploring liminality in the co-design of rehabilitation environments: The case of one acute stroke unit.

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

Co-designing organisational improvements and interventions to increase inpatient activity in four stroke units in England: a mixed-methods process evaluation using normalisation process theory.

OBJECTIVE: To explore facilitators and barriers to using experience-based co-design (EBCD) and accelerated EBCD (AEBCD) in the development and implementation of interventions to increase activity opportunities for inpatient stroke survivors. DESIGN: Mixed-methods process evaluation underpinned by normalisation process theory (NPT). SETTING: Four post-acute rehabilitation stroke units in England. PARTICIPANTS: Stroke survivors, family members, stroke unit staff, hospital managers, support staff and volunteers. Data informing our NPT analysis comprised: ethnographic observations, n=366 hours; semistructured interviews with 76 staff, 53 stroke survivors and 27 family members pre-EBCD/AEBCD implementation or post-EBCD/AEBCD implementation; and observation of 43 co-design meetings involving 23 stroke survivors, 21 family carers and 54 staff. RESULTS: Former patients and families valued participation in EBCD/AEBCD perceiving they were equal partners in co-design. Staff engaged with EBCD/AEBCD, reporting it as a valuable improvement approach leading to increased activity opportunities. The structured EBCD/AEBCD approach was influential in enabling coherence and cognitive participation and legitimated staff involvement in the change process. Researcher facilitation of EBCD/AEBCD supported cognitive participation, collective action and reflexive monitoring; these were important in implementing and sustaining co-design activities. Observations and interviews post-EBCD/AEBCD cycles confirmed creation and use of new social spaces and increased activity opportunities in all units. EBCD/AEBCD facilitated engagement with wider hospital resources and local communities, further enhancing activity opportunities. However, outside of structured group activity, many individual staff-patient interactions remained task focused. CONCLUSIONS: EBCD/AEBCD facilitated the development and implementation of environmental changes and revisions to work routines which supported increased activity opportunities in stroke units providing post-acute and rehabilitation care. Former stroke patients and carers contributed to improvements. NPT's generative mechanisms were instrumental in analysis and interpretation of facilitators and barriers at the individual, group and organisational level, and can help inform future implementations of similar approaches

Stroke care could be improved when patients, staff and researchers work together

Stroke survivors, stroke unit staff and researchers worked together in a partnership aimed at increasing inpatients' activity after a stroke. It was the first time that this joint approach has been trialled in stroke units. This research explores what measures helped make the partnership work, and what the barriers were. People who receive early specialist care after experiencing a stroke are known to have a greater chance of recovery than those who do not. However, many patients in specialist stroke units spend much of their time in hospital without anything to do. The Collaborative Rehabilitation in Acute Stroke (CREATE) study brought together stroke survivors who had been admitted for treatment, their families and staff. They explored ways of increasing patients’ activity. In the original study, researchers filmed interviews with stroke survivors who had been admitted for treatment, and their caregivers. Short, edited films of these interviews inspired staff to make around 40 improvements in the stroke units involved. Staff made it easier for patients to participate in physical, social and cognitive (thinking) activities, and for community and voluntary groups to come in and run activities. This research looks at the process of involving patients, carers and staff (co-design) in bringing about change. It looks at the measures that helped, which included small group meetings, managers’ support and visible changes such as a new space for activities to take place. Barriers included the length of time it could take to make small improvements such as introducing iPads. Overall, staff, patients and families had a positive experience of taking part in this collaborative project. The researchers hope their work will encourage other teams to adopt a co-design approach to research