Types of studies.

We included primary studies that used recognised methods of qualitative data collection and data analysis. Studies that used mixed methods where qualitative data could be extracted were also included.

Topics of interest.

Studies reporting the experiences or views of people after stroke, family members, those involved in managing or commissioning or delivering health or social care services on ESD for people after stroke were included. By ESD, we mean a model of care whereby people with mild to moderate stroke have an accelerated discharge from the acute setting to the home environment to continue their rehabilitation at home as an alternative to conventional hospital-based care [9, 30–32]. Articles were excluded if they were pertaining to ESD but not specific to stroke, or described healthcare services for people after stroke but were not specific to ESD.

Search selection.

A systematic literature search of eleven databases (CINAHL, PubMed Central, Embase, MEDLINE, PsycINFO, Sage, Academic Search Complete, Directory of Open Access Journals, The Cochrane Library, PsycARTICLES, and Scopus) was conducted from 1995 to January 2022. All searches were conducted by the first author (EOC). The search strategy included three key concepts; “early supported discharge”, “stroke”, and “qualitative research” in conjunction with MeSH terms. The first five pages of Google Scholar results were also searched using the three key concepts. The search string can be found in S1 File. The reference lists of included articles were hand searched. The search was restricted to English language publications from 1995 as the first studies pertaining to ESD in this population were published in 1995. Peer reviewed publications and theses were included.

Selection procedure.

All references from the database searches were imported into EndNote X9 by EOC with duplicates subsequently removed. Two authors (EOC and KR) independently screened the titles and abstracts of the identified records for eligibility. A third author (RG) was consulted where consensus was not achieved. Two reviewers (EOC and KR) independently read each full text article identified for inclusion in the synthesis. A third reviewer (RG) was consulted to read any full text article when consensus could not be reached.

Critical appraisal and data extraction.

We appraised the quality of the included studies using the 10-item Critical Appraisal Skills Programme (CASP) checklist for qualitative studies [33]. Two reviewers (EOC and KR) independently appraised the included studies with a third reviewer (RG) involved where any differences of opinion arose. The CASP checklist for each of the included studies can be found in Table 1. The CASP checklist is endorsed by the Cochrane Qualitative and Implementation Methods Group [33] and is commonly used for quality appraisal in health-related qualitative evidence syntheses [34]. Although studies were not excluded based on CASP scores, critically appraising studies served to evaluate and allow discussion on the credibility of findings within the research team which influenced the process of analysis [35]. A customised template, Table 2, was used to extract the descriptive characteristics of each study which included the number and characteristics of participants, location of study, methodology, data collection and key research aims.

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Table 1. Quality appraisal of included studies.

https://doi.org/10.1371/journal.pone.0281583.t001

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Table 2. Characteristics of included studies.

https://doi.org/10.1371/journal.pone.0281583.t002

Thematic analysis.

Findings from included studies were imported into NVivo Version 12. Thematic synthesis is a commonly used approach for a qualitative evidence synthesis [36] that enables transparency with accessible outcomes [37, 38] and attempts to go beyond the original data to seek a fresh interpretation of the phenomena under review [39]. Thomas and Harden’s approach to thematic synthesis involving a three-stage process was undertaken [27]. In the first phase of analysis all data were coded line by line according to its meaning and content by two members of the team independently (EOC & KR). Across all 14 studies there were extensive descriptions of the broader stroke experience such as the experience of a changed body however only findings related to ESD were coded in keeping with our research question. At this stage the researchers remained close to the results of the included studies. This process enabled translation of concepts from one study to another. In the second phase of analysis, discussion between the researchers facilitated the grouping of codes generated in the first stage into a hierarchical structure and subsequently these groupings were named as descriptive themes. In the final phase of analysis, descriptive themes were reviewed by two members of the research team (EOC & KR) and discussed in light of the research question to develop analytic themes which went beyond a descriptive account of findings presented in the included studies.

Theme 1: ESD eases the transition home, but not to community services.

Across the included studies, ESD was described as easing the transition from hospital to home, however the transition to community services at the cessation of ESD was more problematic. Prior to discharge people after stroke had anxieties about going home [51]. Although HCPs asked about the home environment before discharge and potential barriers [41] some people after stroke struggled to predict the challenges they would face at home or to know or express their wishes for rehabilitation [54]. Limited knowledge of ESD [40, 51] or involvement in decision making about ESD prior to discharge [41] was reported by people after stroke.

“Before I actually came out of the hospital, before coming home, I panicked slightly, and I thought going through my mind, how am I going to get around with the walker?… “I’ll never manage, what am I going to do?”‘

[51]

The experience of discharge home with ESD was described as “seamless” by the majority (16/19) of people after stroke in the study by Cobley and colleagues [44], with the intensity of ESD (up to four visits per day, seven days per week for a duration of six weeks) provided a sense of security [44]. Similarly, having an ESD visit on the day of discharge [42] or shortly after discharge [50] was valued by people after stroke for “continuity of therapy, support and assistance with immediate problems encountered in the early days post discharge” [40].

Although they were discharged early, several studies reported that people after stroke felt the timing of discharge was appropriate [42, 50]. While the hospital to home transition was eased by ESD, in contrast, discharge from ESD to community services was often described as problematic. More than half of the people after stroke in one study [40] were concerned about what was going to happen after the initial 6 weeks of the ESD 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”.

[40]

Carers in another study were also concerned about the transfer to community therapy, with concerns voiced around reduced therapy intensity, getting to know new HCPs and break in therapeutic equipment use [42]. Those studies that included details on transition to community services after ESD highlighted problems including challenges securing social care input, disjointed transition to other services and a lack of community stroke services [44, 45]. In contrast, in one study [50], people after stroke who continued with municipal rehabilitation after ESD in Denmark generally reported the transition to be unproblematic. HCPs, in the study by Wohlin Wottrich and colleagues [49], also described anxieties at the cessation of ESD if goals had not been achieved. It was suggested by HCPs in one study that a combined service with ESD and community stroke team components could meet the needs of those with further rehabilitation potential at the cessation of ESD [40].

Theme 2: The home environment enhances rehabilitation.

HCPs reported that people after stroke prefer to get home from hospital [45, 46, 49, 51, 53] and were eager [47] and happy to return home [44]. People after stroke reported positive feelings associated with being at home such as feelings of safety, security, familiarity, comfort and relaxation [47, 50, 51, 54]. These experiences at home were contrasted with the hospital atmosphere by a participant with aphasia (PwA);

“PwA 3 pantomimed marching to depict the atmosphere in the hospital. ‘(points forward towards a cup of tea on the table) You can have a cup of tea yea yea Like we are now Yes (smile)’ (PwA 3)”

[47].

Participants noted that travel to outpatient or hospital appointments in the first weeks after discharge would have been difficult due to various challenges including wheelchair dependency, cost, limited public transport, driving cessation and fatigue [40, 42, 47].

“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”.

[40]

The home environment promoted better sleep [42, 50], recovery [41, 42, 50] and a return to pre-stroke activities and routines thus contributing to a sense of normality, continuity [49, 51] and adjustment post stroke [41, 47]. Therapy at home helped identify discrepancies between “the desires and abilities of the patient on the one hand and the environmental demands and expectations on the other” [48] which could make some difficulties apparent such as cognitive difficulties [42] and thus supported problem solving [45, 47, 48, 49]. This was described by participants in the study by Chouliara and colleagues [45] as an “ecologically valid appraisal of patients’ difficulties”. People after stroke found it meaningful to practise and recover in their everyday surroundings [50] and described ESD as personalised or tailored to their individual needs [40, 44, 45, 51] in contrast to hospital services. HCPs also described rehabilitation at home as more meaningful [47, 53]. The home environment also aided rehabilitation by providing a greater number of and a wider range of task practice opportunities in the home and local area than hospital [41, 42, 44, 47] for example, “carpet-bowls and exercising the dog” [42].

“I wouldn’t of wanted to go out on my own but the ESD Therapy Assistant Practitioner took me” “I took her arm and we went to the shop but later on I went out walking and did a bit on my own”.

[42]

In one study focused on people with aphasia (PwA), HCPs felt naturalistic conversation was enhanced by the home environment as the PwA was more comfortable, the home environment helped establish rapport and gave clues about the person, thus acting as a scaffold and springboard for conversation [47]. Most studies, bar one [41] described extensive use of the home environment by HCPs. The researcher in one study observed [47] that occupational therapists (OTs) and physiotherapists (PTs) used meaningful activities and the home environment more than speech and language therapists (SLTs) during ESD, with the SLT “standardised and formal materials were often brought with the HCPs to the person’s home, such as laptops and picture cards. Fewer materials readily available in the home were used compared to OT and PT activities”.

Theme 3: Organisational and interprofessional factors are critical to the success of ESD.

This theme relates to various factors that influenced the success of ESD. Key factors included the need for clarity on the ESD model of care, the need for some flexibility in the application of ESD criteria, the need for advance planning of discharge from ESD, the need for person-centred ESD scheduling, and the need for ESD HCPs to work effectively as an interprofessional team. Clarity on the model of care was felt to be important to the success of ESD. While HCPs felt good communication with commissioners was important to establish the position of ESD in the stroke care pathway [40], commissioners themselves reported lack of clarity about the position of ESD in the pathway and lack of clarity about its effectiveness [45].

“To be honest I am bit foggy about where Early Supported Discharge sits alongside intermediate care and re-enablement and how these are married up”.

[45]

In contrast, HCPs felt ESD aligned with the provision of best care [53] and they also “recognized that ESD addressed the broader agendas on patient choice and patient goals” [46]. In developing the model of care, the pathway needed to be agreed with the various health and social care stakeholders [46]. The stroke pathway could be hampered by delays at transfers of care [54], lack of ESD slot availability, staff shortages, inadequate care packages [40], impasses over payment for social care [46], tensions between ESD and community rehabilitation teams [46] and challenges with the transfer to community services after ESD [40, 42, 44, 45].

“For instance, staff at site D reported that they could offer the recommended intensity to a maximum of 19 patients, but there were 30 patients in their caseload at the time of the interviews”.

[40]

To increase therapy intensity without further stretching capacity, HCPs trained family members and care providers, implemented telerehabilitation and promoted self-management [40, 45]. In several studies, HCPs emphasised that ESD criteria are important but needed to be implemented with flexibility [40, 45, 47] for example delaying discharge from ESD or taking on some people after stroke who didn’t meet eligibility criteria. Challenges with accessing community services or care packages and service fragmentation were reasons why flexible criteria were needed.

Flexibility was also needed to meet the needs of a ‘new type’ of person after stroke, those post thrombolysis and thrombectomy, who might not meet ESD criteria in terms of physical function needs but who might have potentially hidden issues (e.g. cognition and mood) and different needs (e.g. vocational) [40]. HCPs felt discharge from ESD services should be actively managed and prepared, with timely communication to avoid an abrupt end [40, 48]. Longer spaces between ESD visits preceded discharge [40, 48] and people after stroke appreciated this gradual reduction in visits, joint handover visit by ESD and community staff, and knowledge that the ESD team could be contacted post-discharge [42, 50].

Person-centred scheduling of ESD was supported by participants. In two studies people after stroke valued having ESD timetables [42, 47] to allow planning for formal care visits, social and leisure time, and avoid confusion. Similarly, HCPs felt the intensity of rehabilitation needed to be person-centred rather than dictated by a guideline as “patient feedback often substantiated this view, with patients requesting the time and space to ‘feel at home’ and resume some of their activities” [40].

Interpersonal and interorganisational communication was described as essential to ESD success. A proactive approach to develop communication, trust and rapport between the ESD team and the acute setting, especially in the early days of ESD development to ensure referrers understood the screening and referral process and appreciate the quality of the ESD service was considered important [40, 45, 46, 53]. To support communication between ESD teams and hospital staff, meetings, common training events and working arrangements, such as staff rotations across services [45], shadowing colleagues across services [40], and in-reach by ESD HCPs to the acute setting [49] were described as beneficial.

Inadequate data sharing and lack of joined up or shared IT system was a barrier to communication between ESD and the acute hospital [40, 45]. This was contrasted with the positive experience of using SystmOne in one study where teams could access each other’s notes [40]. Meetings across the “entire pathway” such as regular service management meetings, or quality improvement meetings were described as promoting “clarity on the availability and role of each service and awareness of the pressure points in the pathway” thus streamlining communication leading to a smoother and safer handover between services [40]. A case manager [48] or ESD co-ordinator role [53] was operationalised in some teams with perceived benefits in terms of championing the service and working across service boundaries.

Four studies discussed the benefits of rehabilitation assistants (RAs) or assistant practitioners as part of the ESD team [40, 45–47]. Generic RAs with an interdisciplinary skillset in the team promoted a holistic and interdisciplinary rehabilitation ethos. Benefits of RAs included freeing highly skilled HCPs from repetitive everyday exercises to focus on “the more specialist elements of rehabilitation” [45], thus “maximising the service capacity and cost-effectiveness” [40].

“To be honest, if patients really needed a physiotherapist every single day for the whole of the 6 weeks, that would be hard to do. But actually, we’ve upskilled our assistants to a level now where once we’ve got our plan and we’re happy with that plan and to deploy them, and they can go. It depends on their need”.

[40]

Effective multi-disciplinary team (MDT) working was described as important for ESD service delivery [48, 53] and was enhanced by interdisciplinary practices, team meetings, a shared office base to support communication, good ESD team leadership [40, 46] and collegiality [40]. In one study, ESD HCPs valued having a stroke-specialist nurse in the team to address medication queries, information gaps around medical issues, facilitate holistic care and improving efficiency [40]. One team used the term “nerapists” as a reference to nurses’ and therapists’ shared skillset, while interdisciplinary working was valued and embraced, they emphasised the need for balance between specialism and interdisciplinarity to avoid duplication [40].

“You play every role. You play an occupational therapist, you play a speech and language therapist, you play physio, don’t you, you don’t just go in and do one thing that is physio. You talk about how they’re feeling, what appetite, sleep is like, how they’re managing their everyday tasks, how their speech is. You cover all bases”.

[40]

Theme 4: ESD is a goal focused and collaborative process.

Across the studies, ESD was described as a process of discovering problems, setting goals, resolving problems and evaluating outcomes [48, 49]. People after stroke described goal setting as a collaborative process and identified that therapy reflected their goals or needs [42, 45, 47]. Similarly, HCPs described focusing goals on the interests and priorities of people after stroke [48, 49] and asking them to share life stories to understand their priorities to inform future therapy and goal setting [49]. A small number of contrasting experiences were reported such as people after stroke describing being informed rather than involved in the planning of their ESD [41] and non-person-centred goal setting [54]; “They just had a plan of returning me back to work. It was their goal. When they repeated that every time we met, then I started to cry I think, every time”. [54]

Across the studies, descriptions of positive relationships between HCPs and people after stroke were common. HCPs and people after stroke reported friendship type relationships [47, 51]; “They were such nice girls, I looked forward to the camaraderie we had; we had great chats and craic” [51]. Across the studies, participants described people after stroke being more empowered in their own homes and taking a more active role in rehabilitation or equal role in the HCP-people after stroke relationship [40, 47, 48, 50, 51]. People after stroke appreciated HCPs reassuring, friendly, positive attitude towards them, and celebration of success [47]. However, they wanted ESD HCPs to communicate realistic hope, delicately balancing optimism for recovery with realism and the delivery of tailored feedback on their outcome and performance in tasks rather than generic praise [47, 54].

“They [the municipal healthcare team] really came and stayed here and did something. They showed faith in positive development and supported me in that. It’s important to convey that recovery can still happen, although the progress is slow”.

[54]

Shiggins [47] observed detailed, accurate and explicit feedback about performance from HCPs, however, untailored feedback was also observed.

“PwA 7 was also aware when a HCP was providing her with untailored feedback, when at the end of a session she began to tut and screw up her face in response to HCP 13 telling her that she had ‘done good’, when in fact she had little success in the session and was aware of this”.

[47]

People after stroke wanted HCPs to listen, be empathetic [47, 50, 54], have patience [42] and to allow the person after stroke to be equal in decision making [54]. HCPs accounts of the relationship with people after stroke mirrored what participants reported they wanted to a large degree. HCPs reported dialogue and collaboration with people after stroke as an important vehicle for rehabilitation [48].

“In the hospital, this big institution where you are an authority in a white coat, the patient submits himself to you and wants you to help him and make him well. But at home I think it’s more like you discuss the patient’s problems and co-operate with him to find solutions”.

[48]

Observations of ESD reported mixed findings on the extent of collaboration between HCPs and people after stroke. Genuine collaboration was observed [47]. However, HCPs were more in control of sessions and conversation than people after stroke such as using specific phrases to signify the end of an activity, they also exerted control through their positioning of and control of rehabilitation materials [47].

Theme 5: Unmet needs persisted despite ESD.

People after stroke reported many important improvements due to ESD [40, 44] such as increased mobility, reduced fatigue, a return to driving [42], speech improvements [47] and ESD supported adjustment to disability post stroke [40]. Despite these positive outcomes a number of unmet needs were identified across studies including information needs and carer support needs. People after stroke and carers reported a lack of knowledge about stroke, causes, secondary prevention and medication [42, 44, 50, 54]. Generic information not tailored to their specific needs, was not valued [44].

“You read the pamphlets, the leaflets and things, what to look for with strokes, but I mean the thing is, a lot of the things in there weren’t applicable”.

[44]

Both people after stroke and carers reported difficulties accessing information concerning benefits, allowances, community supports and resources [44, 52]. Participants valued HCPs knowledge of “the wider stroke pathway and health community and relied on them to signpost to other agencies for support” [40] and a link with other services [42, 50]. HCPs described acting on behalf of people after stroke to retrieve information or convey messages. “We act like a kind of an ombudsman for the patient. We make it easier for the patients and you assist them in finding the right authority for their problems” [48].

A further area of unmet need related to the needs of carers, who often reported being insufficiently supported by ESD. Carers described feeling they were thrown into the caring role and described responsibility for the person after stroke as a shock [42, 44]. They described the return home of the person after stroke as a major transition for them personally and taking on jobs that the person after stroke used to do [44] in addition to providing physical care, and new activities such as administering medication. In some cases, they were unable to leave the person after stroke alone due to safety concerns [42] and struggled with emotional changes such as continuous crying [44]. These changes were described as exhausting [42, 44].

“Since he’s come home, I’ve not really gone out very much. Normally I would just go out and do whatever, but I haven’t been able to do that since he’s come home from hospital”.

[44]

HCPs also suggested the need to better support families and, in some cases, presented examples to identify and respond to carers needs [40, 53].

“That’s the one piece of feedback I get from every single family member, I didn’t realise how hard this was going to be and I didn’t realise what it meant to be caring for them”. [53] Carers suggested a “special session for relatives of people who have had a stroke” [52], longer ESD sessions so they could get out of the house and have some respite [44] and more gradual transitions of care [52].

Other unmet needs were reported including insufficient emotional or psychological support for people after stroke [40, 54], insufficient attention to cognitive issues, and activities valued by people after stroke [41] such as social activities [54] and work or vocational needs [50].

Strengths of the review.

We included 14 studies and have successfully generated an enhanced understanding of experiences of ESD. Rigorous and transparent methods were employed in the conduct and reporting of the synthesis. The broad search string and timeframe applied to the searches enhanced the rigour relating to study identification.

Limitations.

Several limitations were associated with this synthesis. We limited our inclusion criteria to English language studies only and included studies were all conducted in high income settings. Additional studies may have been found whereby English was not the first language it was published in which may have generated additional information. Data on carers’ experiences of ESD was somewhat limited as only four of the included studies had carer involvement. Seven studies included the numbers and interviews completed with HCPs whether they were working in a clinical or managerial capacity however it was unclear in one study as to some of the disciplines interviewed [40]. Across the seven studies, only one clearly outlined that an interview was conducted with a Social Worker [49] therefore the wider experience of certain ESD team members may require further consideration. None of the included studies followed participants over time which if completed may enhance our understanding and learning of the experiences of ESD.