Chapter 9Work package 2: patient perspectives

Publication Details

Introduction

The previous chapter qualitatively explored how staff attitudes and behaviours influenced the way that stroke ESD services were configured and run. It also explored the way in which community-wide stroke pathway development and contingent structures and processes shaped service delivery. This chapter focuses on the views and lived experiences of stroke survivors and their families. The purpose is to provide additional depth of understanding on how the variation in operation and delivery of services, as described in Chapter 6, affect and are experienced by service users in the real world. The findings could help inform future service planning, including what may and may not add value from a service user’s perspective.

Aims and objectives

Patients were interviewed as part of WP2 to explore their views and experiences of ESD services. The purpose was to contribute to the pool of data informing how the proposed mechanisms identified from the RES actually operate in real-world settings and the outcomes, as perceived and experienced by the patients.

Methods

Five purposively selected ESD patients from each of the six ESD sites (n = 30) were invited to participate in semistructured interviews. Patients who were actively on caseloads were recruited by the ESD teams in consultation with the research team to ensure that the sample included patients with a variety of characteristics (e.g. sex, age and stroke severity). Interview guides were informed by the three programme theories described in Chapter 3.116–118 However, a realist interviewing approach did not prove feasible because patient interviews required a more informal conversational style.

Procedures

Potential participants were approached by the clinical teams during a routine visit to establish their interest in the study, provide participant information sheets and gain consent to pass their contact details to the research team. If consent was given, contact details were transferred to the research team via a password-protected encrypted spreadsheet. The research team contacted potential participants to explain the study further and to establish whether or not they wished to participate. Patients with mild aphasia were not excluded and, if patients wished, their relatives were able to join the interview to support them. Interviews were arranged at a time convenient for the patient. Information sheets were again provided and explained at the beginning of each interview before written informed consent was gained. Interviews were audio-recorded and transcribed verbatim. All audio-recordings and transcripts were password protected and stored securely on the university server.

Analysis

The interview schedule spanned five overarching topics that were designed to capture the patients’ experiences of ESD: the experience of rehabilitation at home, staff interaction, aspects of ESD that mattered most to them, what patients believe the purpose of ESD to be, and how services could be improved and why. The semistructured design meant that participants could also discuss what mattered most to them about ESD outside the constraints of this schedule.

Data were analysed using the six stages of reflexive thematic analysis recommended by Braun and Clarke.36 In line with conventional practice for this type of analysis, a combination of deductive and inductive analysis was undertaken, with a greater emphasis on deductive analysis in view of the overarching programme theories.

Pen and paper and computer-assisted software QSR NVivo (version 12) (QSR International, Warrington, UK) for Windows (Microsoft Corporation, Redmond, WA, USA) were used to store, sort and retrieve the data to assist with the analysis.

Inclusion and exclusion criteria

The following inclusion criteria were applied:

  • having sustained first or recurrent stroke
  • medically stable
  • ability to give informed consent
  • aged between 16 and 100 years
  • having received ESD within the past 3 months from the beginning of recruitment at each site.

The following exclusion criteria were applied:

  • stroke patients who are not eligible for ESD
  • patients who do not have adequate understanding of the English language to participate in the interviews (translators may not be available in community-based services).

Results

Data were collected from 30 patients between November 2018 and November 2019. Interviews lasted between 24 and 70 minutes (mean 45 minutes, median 45 minutes), excluding consent time. All interviews were conducted in the patient’s home.

Patient characteristics

Overall, patient ages ranged from 32 to 88 years, with a mean of 65.9 years (median 68.5 years). There were 10 females and 20 males. The disability scores at admission to the ESD teams ranged from 8 to 20 (mean 15.7, median 16) on the Barthel scale, with lower scores indicating a greater disability out of a maximum score of 20. The length of stay with the ESD teams ranged from 15 to 107 days, with a mean of 48 days (median 42 days). Patient characteristics by site can be seen in the Table 21.

TABLE 21

TABLE 21

Patient characteristics by site

Sites A–C had the shortest length of stay, indicating closer adherence to the ESD model of an average stay of 6 weeks. Sites A and B provided both ESD and community stroke rehabilitation services; therefore, some patients could be transferred from the ESD pathway to the community pathway, but only the ESD pathway is captured for our length-of-stay comparison. Sites D–F were the most rural services in our study and each service had the flexibility to extend the length of stay of their patients if they deemed it appropriate, hence why we recorded longer length of stays among these services.

Thematic analysis

Three overarching themes were identified, with nine subthemes, and are presented in Table 22.

TABLE 22

TABLE 22

Themes and subthemes

In the following sections, participants are identified in the quotations by the letter denoting the site that they came from, a ‘P’ for patient and a number showing the order of interview at that site.

Theme A: the role of early supported discharge in post-stroke recovery

Lack of prior knowledge and understanding of the service

Most patients had been informed that they would be referred to the ESD team after discharge (n = 24 out of 30 patients). However, half of the patients did not understand what that meant or what services the ESD team would be providing for them and, therefore, were confused about which services were delivering different parts of their care:

I was in hospital when it was mentioned that this discharge team would come in and see me at home.

BP3

I don’t think I have heard of ESD, except when you made me the phone call.

FP1

So what part of the treatment that we have received so far comes under ESD . . . the early thing. Is it the support like dressing and washing or is it the occupational . . . occupational therapist? Or the voice.

Clinical psychologist (CP)2

The lack of prior knowledge of the purpose of the service created low expectations for the majority of patients, who expected just to receive physiotherapy. Most patients were surprised and delighted with the amount and breadth of support that the therapists offered:

No. I didn’t know anything about it at all. So I was amazed and pleased that it did, especially . . . I had as I said such a lot of problems coming and people really putting and helping me out. I was astounded at that. So I’m delighted with it.

EP2

Satisfaction with the service

All participants were very positive about the service. They particularly valued the rapid start of the service after discharge, which provided continuity of therapy, support and assistance with immediate problems encountered in the early days post discharge:

It’s . . . it’s a good service because when you come out, you . . . I think you need some form of . . . otherwise you’ll be straight to the doctor probably. So it is a good . . . good idea.

Assistant practitioner (AP)3

The main benefit I think is the fact that it’s immediate. There’s not this gap between hospital and coming out. It’s immediate.

CP1

And I think as well if you come straight out of hospital home and there’s nothing, that’s such a big change isn’t it? I mean that was difficult anyway, wasn’t it getting used to not having people around twenty-four seven.

EP5

Participants reported that they thought that the service was playing a vital role in their recovery. Many participants could already see rapid and important improvements in their physical recovery, which was helping to rebuild their confidence. They attributed this to the therapists’ motivational working style and did not think that they would have carried on with exercises without their input:

I couldn’t even sit up, so physio’s have, well, they have made a massive improvement in me really. And I can see that. Yeah.

EP3

Which is I think as much the point as the benefit. I’ve enjoyed them being here. I’ve enjoyed them pushing me, because if they hadn’t pushed me I wouldn’t have done it.

DP4

The service was valued by all participants. They stated that they would highly recommend the service to all new stroke survivors to assist with navigating the changes that were needed to adjust to their new disabilities and required changes to ways of living:

Yeah. And they’re good. They’re very good. Yeah. I’d recommend them to anybody.

AP2

In fact, the service was valued so much by the stroke survivors that they worried about new stroke survivors who may not have access to an ESD service:

I think it’s a very good service. And I think, you know, they should give it to everybody when they come out from hospital if they need it. You know. Because I did need it. I was at a point, but I wasn’t at a very good point when they discharged me from hospital. You know there was a lot more to do.

CP3

However, there was a downside to the extreme satisfaction and benefits that patients experienced from the service, which was expressed as a concern by more than half of the participants: what was going to happen after the initial 6 weeks of the service ended:

I don’t know. I . . . I was just worried after this 6 weeks. What happens after this 6 weeks. Because you know you have these people come four times a week and then all of a sudden . . . what’s going to happen? And they said there is another plan [inaudible] . . . but it could take time.

CP5

Rehabilitation dose

The majority of participants felt that they received a sufficient number of sessions at the right frequency. They further acknowledged that it was as much as they could cope with time wise and energy wise:

I think it’s been just the right amount.

AP1

I think it’s probably to a certain degree as much as I could probably take.

DP4

Some wanted more or longer input from the service, but did not want to deprive other people who may have needed the service more:

I wouldn’t want to take it . . . I wouldn’t like to take it away from people who need it more than me if you know what I mean. I think, you know, selfishly I think . . . I think it’s enough you know.

DP1

Patients seemed to be happy with whatever service they were offered. Those receiving a 7-day service had made adjustments to accommodate having visits at the weekend, while those receiving a 5-day service valued the space at weekends to rest and recover and spend time with family and friends:

I only need 2 days. Or I only . . . I could only manage 2 days. I couldn’t manage more than 2 days.

BP3

The reason for that, when they come every day you spend quite a significant time preparing for them to come. So in some ways, it’s a chore. Do you know what I mean? You know, having a shave or brushing your hair, or getting dressed. There is that you know . . . they’re coming so I’d better be ready . . . And I think if I did a 7-day week I’d go barmy. You know, on a Saturday . . . on a Saturday I want to watch the football. So if I don’t have a shave, to hell with it, you know what I mean. So that break on a Saturday and Sunday is nice.

CP1

I:

And you said they came five or six times a week. Was that just during the weekdays? Monday to Friday or did they come on the weekend?

P:

Saturdays and Sundays as well.

I:

OK. And did you . . . were you happy with that?

P:

Yeah. Suits us.

EP5

A few higher-functioning patients felt that they did not really need the service and were happy to be discharged quickly:

No. Because I’ve . . . you know for some people I’m sure it’s very good, but I just don’t . . . don’t really feel as though I really needed it.

AP5

Trust in clinician’s expertise

Patients held clinicians in high regard and looked up to them as authority figures. For this reason, they were unwilling to challenge or criticise them. They were happy to do whatever the clinicians directed them to do:

I’ll leave up to . . . I’ll leave it up to the early discharge team of when they think it’s best for me, because let’s face it, I could say, well I don’t want you’s anymore.

BP2

I:

So . . . is . . . is that because you’re very grateful to be getting the service, that you’re just happy to accept whatever they . . . whatever the visit is, yeah?

P:

Probably. Yeah. Probably. Yeah.

EP3

Patients also valued the therapists’ expertise and knowledge of the wider stroke pathway and health community, and relied on them to signpost to other agencies for support:

And . . . and I do Pilates. And she . . . we were on about trying to get back to that. And she was going to try and find out whether there was a Pilates class at the [hospital] for stroke people, so . . . she was trying to organise that for me.

AP3

Theme B: the desire to recover quickly

For all participants, the need to recover as fully and quickly as possible was key.

Goal-oriented rehabilitation and support

The majority of participants felt that the goal-oriented therapy plans were highly valuable and contributed significantly to their recovery. The time that the therapists spent with the participants to understand their life styles, needs and goals was a fundamental part of this process and very much appreciated:

What I found with the ESD team was that they would come . . . there was no . . . there was no sort of timetable . . . they would stay here as long as I needed them, you know what I mean? There was never a case of ‘I’ve got to go’ . . . I know they’ve got other patients to look after, but this was a very personal experience for me. And certainly I wouldn’t be where I am now as far as improvement if it wasn’t for the ESD team.

CP1

The team established personal rehabilitation goals with the patients, and then planned bespoke exercise and therapy programmes to help patients move forward. Patients practised in between sessions, engendering a sense of agency and involvement in their own recovery and providing a sense of moving forward:

She set a plan in place of things to do to increase mobility and again we started talking task, because that seemed to be one way of trying to get what I needed and what I wanted to be able to do. And then behind her, there is a team of either physios or I think assistant physios who then come out and work through the plan with you. And when things are too easy they make it harder and add things in so . . . and they brought with them quite a lot of equipment to enable me to do these things . . . If there’s something that’s important in your life that you’ve always done and you want to continue doing then they are the enablers of that. They can make that happen.

FP5

The rapid provision of specialised equipment to support the different stages of recovery was particularly valued for comfort and safety and to promote independence and confidence. Equipment could be rapidly changed to meet the differing stages of progression in the recovery:

They’ve given me a . . . stuff for the stairs and everything, haven’t they? Like handrails for the bathroom and things like that. Which have helped.

BP5

Taking control

All participants commented on the restrictions that stroke had brought to their lives in terms of their independence, activities of daily living and leisure activities. They felt the need to be able to challenge themselves to speed up the rate of recovery:

I mean I’ll do what . . . like I say, I’ll do whatever it takes to . . . to improve. Just because I’m so determined and I . . . I want to get back on my feet as quickly as I can really.

DP3

Many were keen to explore additional sources of support, such as support groups at which they could share their experiences with others in a similar situation:

There is . . . there is like a stroke club isn’t there? [Rehab assistant] runs one at [local centre] just up the road here. I would go. Yeah. Just to talk to like other survivors I suppose.

BP5

The majority of participants had recognised and embraced the need to carry on and take charge of their rehabilitation and subsequent recovery:

But it is about your own determination. It’s about making use of what’s there. It’s about making sure you get everything that is available to you.

FP5

The importance of the home environment in recovery

Most patients were happy to have moved to their own homes and felt that they were more empowered to actively participate in their own rehabilitation and recovery. They also felt that the rehabilitation was more tailored to their lives and needs:

They always thought ahead in that respect, you know. If I wanted . . . if they knew that I needed to walk from there to the kitchen, they would leave that place clear. You know what I mean? It’s almost like thinking out the box.

CP1

Receiving therapy at home was also easier to manage from an energy perspective and financially. Given that most of the participants were unable to drive at the time of the interviews, the cost and feasibility of travelling to the hospital daily or even several times per week for rehabilitation would not have been a viable option. This was even more pertinent to patients living in rural areas where public transport was not available even if the patient had been well enough to travel:

They said ‘oh you’d probably have to go there for physio’. And I thought, God how am I going to get there? You know, I’d have to have a taxi every day. And I thought, God I can’t afford that. And then when they said about these coming in, I was like ‘oh that’s brilliant’. You know, because it’s like £6 each way in a taxi. I wouldn’t be able to afford that every . . . four times a week.

CP5

Theme C: the psychosocial impact and importance of support

Loss of identity

All of the participants were having to come to terms with their new lives, altered abilities and routines. Many found it psychologically challenging and were shocked at their own reactions to the situation that they now found themselves in:

I have broke down quite a lot . . . which has shocked me. Since I’ve had my stroke in the hospital I think . . . well since coming out, I’ve cried a couple of times of being home, since I’ve been home. But I’m . . . I was really shocked about that side of things and I . . . well I don’t know where it’s come from if that makes sense.

CP4

Participants described how they worried about being a burden for partners and families:

It’s . . . it’s being a burden to my wife, because she’s having to do everything for me.

AP4

Participants really needed someone to listen to them and to help them to work through some of their feelings, worries and frustrations. Dealing with the emotional and financial impact of their stroke, and being uncertain about their future recovery, was overwhelming. Participants really appreciated the flexibility and the skills that the ESD team had to respond to their emotional and psychological needs when it was needed the most:

I think they were . . . certain times, especially when . . . when I was upset about not being able to go to the [best friend’s] funeral . . . I spoke to . . . [occupational therapist] and we literally spent most of the . . . the hour chatting about it. Because he knew it was something that I needed to get off my chest when you actually think that, you know they’ve come with a training . . . planned and yet they can just totally stop it and listen. And it was fantastic because I just wanted to get it off my chest and . . . and . . . And I think it was more needing than any training I could have been given. I thought it was fantastic what they’d done.

DP1

Although some ESD teams were able to refer patients to psychological support services, not all teams had access to this. Sometimes issues were just surfacing and the new reality was becoming more apparent just as the ESD team were preparing to discharge the patients, leaving some patients with unresolved problems and potentially no specialist support.

Family support

Most of the participants described how the support of significant others was a vital part of their recovery plan. ESD teams involved families in goal-planning and extending therapy sessions by motivating and supporting stroke survivors to continue to practice their rehabilitation in between formal sessions. Partners and spouses appreciated being involved and having the support of the ESD team:

They have involved my wife, but yeah. Yeah, they said that she can walk me round the block and my wife’s quite strict. She makes sure I do my exercise. Yeah.

EP3

Because they’re coming in virtually every day, if I’ve got any problems, you know, I can talk to them about it and if they can’t answer it, they’ll take it back to the team.

EP4

Discussion

Semistructured interviews with patients aimed to explore their views and lived experiences of receiving ESD services to help to augment the understanding of the three study programme theories relating to the adoption of evidence-based core components, geography and communications.

Patients were very satisfied with the ESD service, as has been found previously.38,119 They also reported that it was the main conduit and catalyst for their recovery. Most patients had been told to expect a service after hospital discharge, but did not know or understand what the service was going to be. Several patients expected just to receive physiotherapy and, therefore, were delighted and surprised at the flexibility of the team to work holistically and support their psychological issues, as well as work towards meeting their physical needs. The teams’ ability to signpost and refer to wider community support services were also vital to assist with reintegration into family and community life. Patient expectations are important to manage because the evidence base suggests that positive expectations can increase patient engagement and motivation, and positively influence functional outcomes.120,121

The responsiveness of the team in terms of the early first contact and visit was particularly important. It helped patients and families to feel safe in the transition from hospital, where they were heavily supervised, to home, where there was no immediate professional help and support. They particularly valued the team’s interventions on their behalf to sort out immediate problems and gaps in services. Previous studies have demonstrated that this transfer of care can be a traumatic time for patients and carers, and can increase stress and burden if not supported appropriately.38,49,122,123

Patients especially appreciated that the service was delivered at home. This made the service more accessible and affordable, and meant that rehabilitation could be tailored to real lives, empowering patients to be more involved in their recovery.49 These findings were replicated by Cobley et al.38 in a study of ESD patients who reported that services delivered at home were more cost-effective and less demanding. It also enabled family members to be more involved in the delivery of therapy. Furthermore, research has shown that rehabilitation delivered in the home can improve high-level activities of daily living, such as walking and managing stairs, above that delivered in hospital settings,124 and other functional outcomes.10,122,123

The person-centred approach afforded by the ESD teams with personalised goal-setting was a key component in their recovery by targeting what was most important to patients. This has been evidenced previously.125 This helped with patient and carer motivation to extend therapy outside formal therapy sessions and helped to progress recovery at a more rapid rate. This included rapid assessments and the provision of access to aids and equipment, which was updated and changed as patients moved forward in their recovery. This is important because patient and family motivation and engagement are associated with good rehabilitation outcomes.9 In addition, patients reported that this forward progression helped them to feel more positive and improved their mood.

Patients, overall, wanted to recover as quickly as possible, but recognised that ESD services were stretched and had to be shared out equally across the stroke pathway. They adapted their expectations of the service to the model of service in place in their area. They accepted that the number of visits and the length of service that they received was driven by the capacity in the team, and were happy to receive less than they ideally would like to make sure that those in greatest need also received a service.

Conclusion

Overall, patient experience of ESD was very positive. Patients reported that it was the main conduit and catalyst for their recovery. Early contact from the ESD team was critical to help patients and families in the transition from hospital to home. It was also the mechanism by which immediate problems were de-escalated and resolved, avoiding potential unplanned re-admission to hospital or transfer to residential care.

The delivery of the service at home enabled patients to engage and participate in their recovery more fully. This would not have been achievable if travel to a treating centre had been required. This was particularly relevant in rural and remote areas.

The person-centred, goal-oriented approach of the teams was highly regarded by patients. They reported that this optimised their engagement in the therapy and provided them with a locus of control, which they felt resulted in a more rapid and fuller recovery.

Patients accepted and were grateful for the dose and intensity of the therapy that they received. Although some would have preferred more frequent visits to speed-up their recovery, they were cognisant of the constraints that the teams were working under. Patients were satisfied with either the 5- or the 7-day service model, dependent on what was on offer to them.

Early supported discharge services delivered by experienced specialist stroke teams enhanced patient experience and optimised their potential recovery.