Evidence
Alert

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. 

Further information on strokes is available on the NHS website.

What’s the issue?

A stroke occurs when the blood supply to part of the brain is disrupted. This is a life-threatening event and, although some people recover quickly, many others have multiple and long-lasting problems. These can include anxiety and depression, weakness and paralysis, and problems speaking and understanding.

People who receive early specialist care, including rehabilitation, are more likely to regain their independence. However, patients in stroke units are likely to be inactive. They report being bored; some say they are left alone for most of the day without anything to do. Inactivity after a stroke has been found to add to mood disorders, and make any cognitive impairment (confusion, or problems with memory or concentration) worse. 

Most approaches to increase activity in stroke care have been led by researchers rather than stroke survivors or their carers. They have not been widely taken up beyond the research sites. This Collaborative Rehabilitation in Acute Stroke (CREATE) study brought together patients, their families and staff to find solutions. This approach, called experience-based co-design, has led to improvements in many healthcare settings such as cancer care and dermatology, but it had not been previously tested in stroke units. 

In the CREATE study, researchers observed the activities of stroke patients in four stroke units for several months. They filmed interviews with stroke survivors and their families. They also interviewed stroke unit staff, managers, support staff and volunteers. 

An edited version of the filmed interviews and a summary of staffs’ views on changes required to increase activity were later shown to participants (stroke survivors, their families, and stroke service staff). They discussed possible improvements that could be made in each stroke unit. The participants met in small co-design groups to work out how best to implement the changes. Around 40 improvements were made across participating units. 

What’s new?

The current study looked at what worked well - and what did not – in CREATE.  Researchers observed the stroke units for 366 hours in total and interviewed 76 staff, 53 patients and 27 carers about their experience of taking part in the study. They also observed 43 co-design meetings.

Overall, staff felt the co-design process was more effective than previous initiatives and had increased the opportunities for activity. Stroke survivors and family members found participating in the study feasible, enjoyable and worthwhile. They felt they were equal partners in determining priorities for improvements. 

The study identified factors which helped in co-design, along with the challenges.

1. The structured and time-limited involvement of researchers, who were external to the units, enabled key staff to participate while continuing with their usual work roles and responsibilities. But some staff relied on researchers to lead the process rather than taking on leadership themselves. This could mean that improvements stalled at the end of the project.

2. The edited filmed interviews helped patients and carers identify shared beliefs on the need to increase activity in stroke units. The films heightened staff awareness of patients’ experience.

3. The small numbers of people involved in co-design groups increased participants’ commitment to action and drove change. But small groups meant other staff were less involved; fewer medical staff and nurses took part than therapists and support staff. It was challenging to recruit and retain stroke survivors and carers.

4. Managers’ support was critical for staff involvement and helped groups access resources and negotiate to change aspects of stroke unit organisation.  Staff external to the stroke units with previous experience in service improvement often knew what changes were possible. But it was challenging to involve some managers since the project did not directly address national targets.

5. The length of time needed to make simple improvements could reduce motivation. For example, it took weeks to produce new signs or to make iPads routinely and securely available for stroke survivors. Managers could block or ignore requests for funding or changes in the use of space.

6. Engaging staff who were not directly involved in co-design could be challenging. Visible changes such as new spaces for activity drew their attention to the project. Activities that could be added to existing practice were quickly incorporated; routine volunteer-led activities, such as singing with students and community music groups, were seen as valuable. However, some of the diverse staff groups felt they were not consulted about improvements that would require their ongoing commitment.

Why is this important?

The CREATE study found that a partnership between staff and patients can drive improvements in hospital stroke services. This work found that co-design was feasible, but also reported on the challenges involved. Their findings should help other research groups embarking on co-designed research.

The researchers believe that short, edited films make patient and family experiences real, in ways that brief written questionnaires cannot. Staff were confronted with the fears, frustrations, and the positive and negative reality of stroke survivors’ experiences when staying in a stroke unit. This may have acted as a catalyst for them to bring about change, and increase opportunities for activities outside of planned therapy. 

Structured co-design, which involved researchers external to the units, enabled busy staff to take a full part in meetings where they reflected on proposed changes. This was important in introducing activities that could be sustained over time. But co-design groups were small, and it was challenging to involve wider groups of staff. 

New social spaces for activities were created in all the units which took part. The project increased engagement with local community groups. Charities and local colleges welcomed the opportunity to support their local hospital and patients enjoyed engaging with them. Working with community groups appeared to improve staff motivation, helping them sustain commitment to making improvements to patient care. 

Beyond the study, staff members will need allocated time outside of their usual clinical roles to implement co-design. It is not clear how feasible this is for many stroke units.  Managers’ involvement and support will be key to allowing staff involvement and to enabling change to take place.

What’s next?

Further research could explore whether this collaborative approach to driving improvements is effective in stroke units in other parts of the UK and abroad. It will be important to find out whether the improvements seen in the study were sustained over time and whether they led to increased physical, social and cognitive activity for patients. 

The researchers have presented the CREATE results at national and international conferences. They are developing a short video presentation to help respond to requests for advice from other stroke units.

You may be interested to read

This NIHR Alert is based on: Clarke D, and others. 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. BMJ Open 2021;11:e042723 

The original CREATE study: Jones F, and others. Addressing inactivity after stroke: The Collaborative Rehabilitation in Acute Stroke (CREATE) study. International Journal of Stroke 2020;16:6

Research on sedentary behaviours after stroke from the perspective of stroke service staff: Morton S, and others. A qualitative study of sedentary behaviours in stroke survivors: non-participant observations and interviews with stroke service staff in stroke units and community services. Disability and Rehabilitation 2021. doi:10.1080/09638288.2021.1955307

EBCD: Experience-based co-design toolkit: information from The Point of Care Foundation for researchers who are interested in running a co-design trial.

 

Funding: This research was funded by the NIHR Health Services and Delivery Research (HS&DR) Programme. 

Conflicts of Interest: One of the authors teaches on a co-design training course run by The Point of Care Foundation in London. The remaining authors declare no other competing interests.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

Stroke survivors and family members found participating in co-design to be feasible, enjoyable and worthwhile. A key part of their experience was feeling that they were equal partners in determining priorities for improvements in their local stroke units.  

Stroke units experienced real challenges during the study, including staff shortages, changes in service provision and staff turnover. Even so, the focus on patients’ experience legitimised their involvement in driving improvements. The researchers recommend that this form of co-design can be effective. But managers need to be able to allow staff the time to undertake this work in addition to their usual roles.

David Clarke, Associate Professor Stroke Care, University of Leeds

Stroke Association

This is an interesting approach that puts working with stroke survivors and family carers at the centre of developing organisational improvement and interventions. Far too often novel interventions are designed with limited involvement of patients.

It is no surprise that experience-based co-design (EBCD), which involved people with lived experience of stroke throughout the intervention development process, was beneficial. These people have first-hand experience of facilitators and barriers to their participation in activities in stroke units, incorporating this knowledge into organisational improvement and interventions is a vital component to their success. However, the research identified significant barriers to the co-design approach including inadequate staffing levels to implement change and limited generalisability of findings when working with small groups of staff, stroke survivors and family carers. 

These barriers may be faced across other studies, therefore it is important that adequate resources are dedicated to facilitating co-design approaches in research.

Richard Francis, Head of Research, Stroke Association 

Physiotherapist 

This study illustrates what partnership working can achieve in terms of meaningful change, but it also details the processes involved, the challenges faced and the rewards for those involved. Engaging in co-design is relatively time intensive and is harder for some members of the team to take part, such as nurses due to their pattern of working. With support and facilitation from experienced stroke researchers, the pathway for all can be eased.

Stroke and other rehabilitation units will be able to use these findings and while funded researchers are not widely available in this way, local universities which run masters programmes could become active partners in co-design activities. Smaller quality improvement projects working towards a shared goad could help contribute to successful change.

We need not to forget the value of true partnership and democratic working for practice development and bettering the lives of people experiencing life changing events. As an active researcher and clinician in the field of stroke, this study resonates with me and I will draw upon the findings in my teaching, clinical engagement and future research studies.” 

Cherry Kilbride, Physiotherapist and Reader, Brunel University London and Lead Allied Health Professional for Research at the Royal Free London NHS Foundation Trust

Lived experience

I survived a stroke 10 years ago and think that these results need to be shared with patients, carers, and all professionals working in stroke units. If this approach were to be followed, it could lead to the reorganisation of stroke units. Patients would leave them with enhanced skills for life which would increase their wellbeing and save money in the long term. 

Stroke units need to be targeted one at a time with efforts made to ensure that the changes stick. A ‘change team’ could be formed to work with the unit. Patients and carers should be involved as equals and any thoughts of ‘us’ and ‘them’ avoided.

Frederick Higton, Public Contributor, Nottingham