At sites 1 and 2, filmed patient interviews carried out pre implementation were synthesised to produce a composite film shown at all joint events. Staff interviews and ethnographic data were also analysed and contributed to the data corpus; these were presented at separate staff and patient events at sites 1 and 2. These data underpinned and drove the discussions, which led to the priority areas for co-design groups. The ideas generated were largely similar across all four sites and focused on space, activity and communication. With minimal local variation, ideas were revised or shaped at the joint meetings and then interpreted and adapted in co-design groups.
Space
I often thought, on the stroke unit, it would have been nice to have a little group where they all could be interactive with each other instead of sitting staring at the walls . . . make the day spread out a bit better . . . I was always sitting watching things and thinking they could have a little group in the corner where they could be doing little things.
Carer, site 2, pre
The above quotation illustrates the inter-relatedness of space (environment) and activity, which became increasingly clear during the EBCD process. The four sites differed in physical layout, colour scheme, room size and use, and available social and outdoor space. However, across the sites, staff members’, patients’ and family members’ suggestions to improve the environment were very similar. Site 1 had no shared space (day room) in which patients and visitors could meet, and visitors were cramped by the bedside. Site 2 had a day room but it was used mainly for staff meetings and equipment storage; this was replicated at site 3, which had a garden but it was accessible only through the day room, which patients did not use. At site 4, the day room had become a storage area for wheelchairs and specialist stroke chairs; another seating area was routinely used by staff for taking breaks and storing cleaning equipment. Our observations confirmed the restrictions posed by limited space and the impact on patient use; there was little or no space or opportunity to socialise in groups with peers or visitors. This issue was compounded by areas that could have been used by patients and visitors instead being used as storage for clinical items. Space and furnishings appeared to affect patient and carer morale; this issue was depicted in data from all four stroke units, although less so at site 3, but generally environments were felt to be uninspiring:
And it looks very much like a hospital environment, I think the colours are very hospital-y, I think the decor is a bit shabby and when you’re spending, when you spend, you know, you’re spending months in this hospital sometimes it just feels like there’s nothing that looks particularly homely.
Patient, site 1, pre
Restrictions on activity caused by the environment were also noted across all sites, as illustrated by how the way in which a ward is set up can limit communication between patients:
When she [the carer’s wife] first went in . . . a really elderly lady was in the next bed and she couldn’t communicate at all. If they could have rotated the beds round so that the ones who could talk to each other [were next to each other], rather than have to talk over them to another patient, that would have been better for them.
Carer, site 2, pre
Patients and staff felt that space could be repurposed to allow more opportunities to move about, play games and socialise. They suggested getting rid of clutter in therapy gyms, day rooms and corridors. The restrictions on activity caused by equipment storage was evidenced in observations ():
Equipment storage in corridors at site 1. Reproduced with permission of Fiona Jones, University of London, personal communication, 2020.
The corridor is cluttered with table, trash bins etc. so we have to take turns [to pass] . . . The corridor is cluttered with a hoist, 3 wheelchairs, various trolleys and trash bins.
Field notes, site 1, pre
In addition, the space around each bed was limited, and frequently tables were used for clinical equipment such as wipes or syringes, leaving little room for personal items (). Frequently staff complained about the ward not being fit for purpose and restricting independent activity:
Typical bed space and décor at site 1, described by patients and staff as cluttered and uninspiring. Reproduced with permission of Fiona Jones, University of London, personal communication, 2020.
On the movable table next to his bed, I see a little jar with water and a cup half-filled with orange juice, tissues and a blue folder like the ones used for patients’ notes. On the bed side table there are two framed pictures – one is at the front and partially covers the other. The rest of the table is occupied by medical equipment.
Field notes, site 1, pre
I don’t think this ward is suitable for stroke rehab, we need a bigger ward definitely. We’re always falling over stuff. I think because, you know, a simple question of, ‘Can I go to the toilet?’ we’ve got to move everything . . . So the poor little patient’s waiting an extra 5, 10 minutes and they might have peed themselves so that’s not beneficial to them because that’s just promoting incontinence and, you know, they’re on a rehab ward.
Staff, site 4, pre
The benefits of the bedside having a personal feel developed as a theme through our observations and interview data. We observed that when personal items were around the bedside, staff tended to interact in person-centred ways to a greater degree, asking the patient questions about a family member or a photograph:
I noted that the patient in bed 19 had a different bedside than other patients in the bay, as the family had brought in things that were important to her into the ward. She was keen to show me everything they had brought in, and felt it was immensely therapeutic to be able to look at pictures of family instead of the blank wall – she said she had spent time gazing at them and thinking about each of them.
Field notes, site 1, pre
Additionally, some carers had done their best to enhance and personalise the spaces around their relatives who were unable to get out of bed:
I took photographs and pictures and put them all on the wall to try and brighten it up, because it was just horrible, it was a horrible ward.
Carer, site 2, pre
The sense of being trapped in the ward and the lack of light seemed to add to the feeling of dreariness and loss of connection with the outside world:
[. . .] is sitting in bed. The lights are off and the blinds down. The room is quite dark. She is sitting in silence. The TV is still positioned in front of her but it’s off.
Field notes, site 1, pre
The necessity of having somewhere else to go apart from the bedside became a strong priority for change:
A table maybe in the middle of the ward to bring people together.
Carer, site 3, pre
It would have been good to mix with other people, so you can get to know them.
Patient, site 3, pre
One carer at site 4 mentioned that she struggled when using a wheelchair to take her husband to the hospital café, which was a considerable distance away, and that she would have preferred to have been able to go for a drink and change of scenery to a nearby day room. She also felt that being in the day room, rather than off the ward, would have made it less likely that her husband would miss therapy sessions. When space was available, it was often used only by staff, and the impact on activity was evidenced at sites 2, 3 and 4 (site 1 had no day room) ( and ):
Day rooms at sites 2 and 3, which tended to be used only as meeting rooms for staff. Reproduced with permission of Fiona Jones, University of London, and David Clarke, University of Leeds, personal communication, 2020.
Day room at site 4, which was used for storing specialist chairs and wheelchairs. Reproduced with permission of David Clarke, University of Leeds, personal communication, 2020.
I think the day room has, has been a bone of contention in terms of the nurses are upset they can’t use it as a restroom. The therapists and everybody else view, their view it’s not a restroom, it’s a day room, how do we try and accommodate everybody? It would be nice to have a bit more office space for everybody else, it would be nice to, you know, kit out the gym a little bit better so you could use it more. The garden I think, you know, we don’t use our garden space enough, yeah.
Doctor, site 3, pre
Activity
I think [being a patient in here] it must be incredibly and utterly boring, I think, I mean I think the odd occasional therapy session that they get from speech, OT and physio, I mean that would amount to maybe, what, two and a half hours, if that, maybe three.
Staff, site 2, pre
All of our data demonstrated limited activity opportunities beyond those provided in scheduled therapy sessions. During over 190 hours of pre-EBCD fieldwork across all sites, we saw very little evidence of patients independently practising activities (either games or prescribed exercises) and minimal or no involvement of other agencies such as volunteers or community groups:
Interviewer:
Can you give me any examples of some activities that you saw other patients doing on their own?
Patient: No, nobody. I never see anybody doing anything on their own.
Patient, site 1, pre
Patients and staff highlighted the boredom and lack of stimulation, especially at weekends; this was corroborated by our fieldwork, which also took place at weekends. None of the units provided a 7-day therapy service, and interviewees felt that weekends were quieter, except at site 4; here, the patients interviewed suggested that there was little difference between weekdays and weekends, in that they found the days equally long with little to occupy their time except waiting for family and friends to visit. At this site, all patients interviewed complained of being bored in their free time between care tasks such as washing and dressing, and scheduled therapy sessions. Apart from visitors, the patients did not report much engagement with other people or much participation in physical or cognitive activities. At site 2, OTs and PTs worked on Saturdays but they spent the majority of their time assessing new patients on the adjacent hyperacute/acute unit. A stroke rehabilitation assistant worked on Saturdays and Sundays on the rehabilitation unit but focused attention on those who needed additional therapy and did not provide alternative social or cognitive activity opportunities:
‘Nothing happens’, says a Health Care Assistant [HCA]. ‘Weekends are long’, comments another HCA. ‘Weekdays are very busy – they [patients] have got everyone coming into their rooms. [At] weekends, they only see us. They get their care, obviously, but that’s it. It’s like – what happens now? Do I count down to Monday?’ she says looking down at her wrist.
Field notes, site 1, staff event
At all sites patients emphasised that they would have liked to have been more active and perhaps to be encouraged to play a game or sit with other patients in the bays or in a common area:
It would have been good to mix with other people, so you can get to know them.
Patient, site 3, pre
Observational data in particular highlighted to us how patients’ activity levels were influenced by staff members’ structures and routines. Inactivity was most marked between routines such as mealtimes, getting washed and dressed or receiving therapy. Patients tended to describe how their day was structured mainly around mealtimes:
I’d get up . . . they came round and they made the bed first . . . they gave us a cup of something or other to go with it and then they got on and did their own thing, other people, you know, and then hopefully [you were] one of the first ones, if not . . . 11.20 was the latest I ever got done [washed and dressed]. It should have been done before 9 o’clock you know . . . then they [the nurses] said ‘well, you know, basically you’ve got to get out the bed and sit at the side of it’ . . . Then we had breakfast, which we just got at the side of the bed. Then I tried to get some written work done [speech and language therapist exercises]. And then it’d be lunchtime and you all come round with the lunches and stuff and it’s fine, but then, then they just left you at the side of the bed and after lunch, you know. So there’s only speech therapy and physiotherapy . . . And then it was teatime and they put us all our stuff [food items] out.
Patient, site 4, pre
There was overwhelming agreement in staff interviews that patients had the potential to be more active than they were. Staff also acknowledged that this was hindered by their highly routinised work. Anything more than getting through a list of tasks was a bonus:
After so long then people [nurses] get to know, ‘This is the norm, this is the routine, this is what happens, you come to work, you do your jobs’. We’ve even got a list of jobs that you do, and not on any of that list is, not one that says, ‘Spend time with the patients to talk to them, or do games with them or anything,’ it’s all about getting things ticked in a box.
Staff, site 2, pre
The same staff member felt that as patients conformed to routines they became less likely to express their own views and ideas:
Hobbies and things, I think they probably don’t get the opportunity that often to do what they particularly like to do, we’ve got things that we can offer, like chess, draughts, puzzles, magazines, there’s the volunteers that come round with newspapers, but that’s sort of organisationally based as well, they don’t come at specific times. So, I think, to fit in something that, if they had a specific time to do it, if they said to us, ‘I’d like to do this at this particular time’, I think there are ways that we could try and accommodate it, but I think people come into hospital and think, they just conform to that routine of when the meal times are and that quite rigid set routine, and you find that they just seem to go along with it and don’t then tell you, ‘Well, actually, I prefer to do this at this time’, it’s almost like they seem to lose their voice.
Staff, site 2, pre
Promoting activity was not visible to any extent in many staff routines and structures. For example, as was observed, activities were not mentioned as part of the nursing handover:
All staff were following the handover of the night nurse. It wasn’t until the handover had happened did they look at the patient and have any interaction, asking questions like ‘did you sleep last night?’ It was often the lead nurse that did this, he went to the patient and shook their hand, smiled and said ‘hello’- most seemed to recognise who he was. Hardly anyone else interacted with the patient. I heard no hand over of information about what the patient could do for themselves, or any aspect of their recovery, or activity.
Field notes, site 1, pre
All staff members interviewed had concerns about patients being bored and not having enough stimulation. Some of the reasons cited here overlap with ‘space’ as a priority area but illustrate the restrictions given by staff as reasons:
There is nothing for them to do. [. . .] We need something in the way of entertainment for patients [. . .] they need something more.
Staff, site 3, pre
Exploring in staff and patient interviews what could be done to provide more activity opportunities generated many ideas:
I would just love us to have a bit of money to use at our own discretion . . . on therapeutic items. Because you can get lots of things that you can do, unilaterally, like one-arm technique to do like cross-stitch or something, like the stands and things that you can get and we don’t have anything like that. [. . .]. We’ve got very, very dated equipment.
Staff, site 2, pre
Staff also highlighted concerns about their unit, which was supposed to enable rehabilitation and recovery, and the negative impact of the structures, routines and atmosphere. This was compounded by an overall impression that staff were busy and had little time for anything other than clinical tasks. During observations, staff would frequently mention that they were busy, and during interviews members of staff reported that they were too busy to organise activities outside the normal therapy time:
Yes. Challengingly busy, but that’s inevitable. You know, obviously many of the patients are either lying or sitting in bed, not active. Once they’ve had their needs either addressed, or they’ve managed themselves, which is less common, they are spending a lot of time inactive. There’s, I guess, overall I find there’s very little social interaction with patients, very little chit chat, or chatter.
Staff, site 1, pre
Our observational data largely validated the perspectives of staff, patients and carers. In addition to the comments made in interviews, informal staff comments during observations indicated a shared perception that social, physical and cognitively stimulating activity outside therapy on stroke units had decreased over time rather than increased. Although there was a profound awareness that both scheduled and unscheduled activity needed to be increased and although there was a strong will for this to happen, there were some differences across sites in how some staff groups used their time. At site 1, all staff broadly acknowledged the impact of ‘downtimes’ such as weekends, but we saw little attention paid – or suggestions given – to patients regarding what they could do outside scheduled therapy. At site 2, although all staff routinely talked about how busy they were, there were late morning, post-lunch and post-evening meal ‘downtimes’ during which staff would congregate in a central area and chat. At sites 3 and 4, observations also indicated high nursing workloads and levels of patient dependency that left little time for staff to engage in activity with patients. However, when the units were fully staffed and less busy, the same behaviour was evident; there was a sense that when the routine care tasks were completed staff were entitled to stop and rest until the next set of tasks required completion. Although there were some exceptions at each site, promoting and supporting patient activity was not part of the ‘routines’ for most nursing staff.
Communication
The final issue was communication. There was an overall impression of missed opportunities to enable activity reflected in our ethnographic observations and the limitations of communication with staff was raised by patients and families. Each unit constituted a specific type of space where communications were structured around the tasks at hand, and outside this communications were related to information-giving (e.g. feedback on progress and prognosis), with very few ‘small-talk’ interactions. Unstructured phatic communication was not the norm. We saw very little evidence of personal and social interaction between staff and patients, or between patients; when this did happen, patients commented on how much it inspired or encouraged them to do more. Communication between staff and patients was again shaped by structures and routines, and the lack of interaction outside those times was noticeable. Patients also felt that communication could enable their activity and wanted more specific ideas from staff, and feedback on what they could do independently or with a carer. Patients and families had a shared perception that the staff group were very busy and had limited time. Our observational data largely supported these comments and we rarely saw anything other than task-orientated interactions. As noted in field notes, there was also a lack of ‘chatter’ between patients and members of staff, which created a rather quiet, uninteresting atmosphere:
Hardly anyone else interacted with the patient. I heard no hand over of information about what the patient could do for themselves, or any aspect of their recovery, or activity.
HCA [health-care assistant] walks in and push her trolley next to him. She records some routine observations of pulse and blood pressure. They don’t talk. He closes his eyes while she performs the procedure.
The group moved on without speaking to this patient. There was no other exchange of information other than about his PEG [percutaneous endoscopic gastrostomy] tube.
A nurse came in to attend to the patient in bed 21, the curtains were pulled but I heard no chatter.
Field notes, site 1, pre
It was not always what was said but what was not being said. One patient stressed the importance of ‘good morning welcomes’ (patient, pre, site 1) and others mentioned the importance of staff introducing themselves to patients:
I just found it horrible when no one even says a good morning, but they are discussing my condition . . . Even down to saying things like ‘I am waiting for a letter from the council’. It feels like your private life is not private at all . . . Because I have had a stroke you lose everything, dignity, the ability to talk and walk, it feels horrible.
Patient, site 3, pre
There were positive examples of communication. Those members of staff who spoke to the patients ‘as a person’ stood out during our ethnographic observations, and some of them were explicitly mentioned during the interviews:
She [health-care assistant] just made the unbearable bearable, she really did. We all hated the weekends when she wasn’t there, you’re just bored anyway and there was mostly agency staff at weekends and, you know, it was just, we just so missed having her around. She just, you know, she used to say to us like ‘we’ll laugh together and we’ll cry together’, you know, and she was just amazing.
Patient, site 3, post
Patients and families gave very few examples of knowing how to be more active; they could not remember being given advice and we rarely witnessed communication that would encourage activity:
It was only the second day, as soon as you got to the rehab ward you wanted your laptop, didn’t you, to check e-mails? [As] the relative, you think, ‘Oh, should I be doing that, will it harm him any more?’, so I went and asked the sister and she was very enthusiastic, ‘Oh yes, anything that will stimulate him, bring it in’, so she was really encouraging . . . You feel you need permission to do these things.
Carer, site 4, pre
Overall, our observations and experiences of communication varied, depending in part on how busy staff were or on the staff who were on the unit that day. However, patients felt that there was inconsistency in receiving information and in staff members’ understanding of their needs:
I mean the first day I got there [. . .], it’s just like, ‘this is your bed, get your clothes off and try and get into bed’. You’re not helped to even get in the bed and then I remember, I had to call, I went to call a nurse, one of them said ‘Why didn’t you call me by the bell?’ I said, ‘because all I was told was, we’re going to get weighed and straight into bed’, no one said a word to me, so I didn’t know anything, so you’re left in limbo. And you feel like a nuisance and don’t ask. And you shouldn’t have to be asking, you know. I remember that night crying and one of the nurses had to come and comfort me because I said I want to go home, I’d rather go home and not be able to do nothing, because that’s how I felt.
Patient, site 3, post
We found alignment between staff and patients/families on many issues relating to communication.
The sense that there was ‘no time for chat’ came through in many staff interviews, which resonated with patients’ and families’ interviews and our observations. Talking positively to patients and wanting to get to know them as a person was not necessarily considered part of the ‘work’. Staff reported that they felt limited by time and clinical priorities:
I just feel like there’s just limited time, like I’m sure everyone would love to sit down and have a conversation but they’ve got so much to do and I think that probably makes people feel more, more stressed and probably more afraid to get into like a conversation because then you have to be rude to get out of it, so maybe if you feel like you never get into it then you don’t have to be rude in that way.
Staff, site 1, pre
In addition to the lack of social communication, we observed, without exception and across all sites, that notices by patients’ beds described information for the purpose of conveying clinical information between staff and very little about personal needs, experiences or activity goals or plans. The sense of ‘the person’ was absent in this information ().
A typical method used at site 1 of conveying abbreviated clinical information written on whiteboards above beds. Reproduced with permission of Fiona Jones, University of London, personal communication, 2020.
Staff cited many challenges with finding time in their existing schedules to prompt, set up and participate in activities with stroke survivors. These comments were mentioned by all staff groups but more commonly by nurses, who did not appear to see ‘increasing activity’ as a key nursing function. However, the challenges of doing anything other than routine tasks contrasted with the following comment from one staff member:
I do make a massive effort with everybody, I try to give them a bit of my time even if it’s me sitting down with them for 5 minutes, but I mean there’s no facilities to do much else with them than talk. Or if you do, you’ll probably told off for sitting down and talking to them. We [health-care support worker and a student nurse] were getting [patient name], up one morning, he’d just come onto the ward, anyway we were asking him about his life and, you know, joking with him because he had a really good sense of humour, he was only 42, 43 and he really enjoyed that, and we were getting him up, because he was like ‘I’ve been so bored since coming in here’ and he said ‘Thank you for you two coming in and cheering me up and making a difference’. And then one of the nurses popped their head in and was like ‘Less of this and more work’, and I was like ‘Have you actually listened to what he was actually saying to me? We were actually discussing his life with him’.
Staff, site 2, pre
In conclusion, although these units were delivering on national targets for therapy provision, the extent of patients’ inactivity outside scheduled treatment was concerning. This was compounded by spaces that limited activity opportunities and by staff routines that were structured to ensure that caseload was managed but not to promote activity. Communications between staff and patients were task oriented and not patient centred, so there were few instances of focusing on what patients would want to – and could – do on their own. There was a small number of instances of activity promotion (e.g. the art group at site 2), but in the main there was a clear mismatch between staff members’ understanding of the need for and benefits of increased activity and the current service provision in these stroke units. Participation in the EBCD process at all sites led to the identification of and agreement on priorities for improvements that it was considered would lead to increased activity. The impacts of some of these changes are summarised in Chapter 5.
