TY - JOUR
AU - Kelly, Daniel
AB - Background Stroke is one of the leading disabling conditions in the United Kingdom. While an increasing focus on the rehabilitation care for stroke survivors has been noted, practice guidelines, targets and services tend to be tailored for the elderly population rather than young adults. Objectives This scoping review aimed to map the existing literature on the rehabilitation care experiences and outcomes of young adults post-stroke aged between 18 and 45 years within acute and social care settings. Methods and analysis A scoping review was conducted to identify existing practice and published academic and evidence-based literature related to the topic. Arksey and O’Malley’s framework guided the review and reporting followed the PRISMA-ScR checklist. Electronic databases and grey literature were searched to capture the potentially recent and relevant literature available in English from year 2000–2022. The databases included CINAHL, MEDLINE, EMBASE, PsycINFO, ASSIA, AMED, PEDro, Cochrane Library and Web of Science. Grey literature was searched from the following sources: Google Scholar, websites of networks, organisations and charities related to stroke. Hand searches were performed on the reference lists of the included articles and grey literature to find relevant references. Data were extracted on young adults’ experiences of stroke and rehabilitation care and their outcomes and experiences of a particular stroke rehabilitation programme in acute and social care settings. Results Eighty-five articles were included in this review. In most instances, stroke was reported to negatively impact young adults, although positive consequences were also documented. The focus and the outcomes of stroke rehabilitation were predominantly physical especially in the areas of movement, communication and memory. Young adults experienced a lack of age-adapted stroke rehabilitation in acute and social care settings. Conclusion Our results highlight the unmet needs of young adults in their stroke recovery journey. Effective rehabilitation programmes and interventions should be developed to support young adults following stroke and meet their age-specific needs. Introduction Stroke is the third leading cause of disability worldwide and number one among neurological disorders [1,2]. In the UK context, stroke is one of the foremost disabling conditions affecting the population [3]. Although the risk of stroke increases significantly with age [4], in the UK around 6% of new strokes are in the 18–45 age group and almost half of long term stroke survivors are aged between 20–64 years [5]. Stroke in young adults may result in sudden death or a life with severe, moderate, mild or no apparent disability [6]. Post-stroke challenges can include physical, emotional and psychosocial aspects that change younger adults’ lives significantly [7,8]. These changes also impact on how they return to a variety of social activities after stroke such as family, childbearing or childrearing and work [9]. The stroke recovery journey of young adults is unique to each individual, as such this may involve reshaping their life goals and how they perceive themselves [10]. Given their unique recovery journeys and their age-specific needs around family, relationships and career or employment, stroke rehabilitation for young adults should be tailored to the individual [10]. However, research on stroke rehabilitation often assimilates people who have had a stroke as a homogenous group regardless of age. Guidelines, targets and services tend to be focused more on the elderly population and may not address the needs of younger adults following stroke [11,12]. Therefore, there is a pressing need to explore the experiences of young adults diagnosed with stroke, the scale of the needs, and the availability of rehabilitation services to support them. This scoping review aimed to explore the existing literature on the impact of stroke on young adults, the focus and the outcomes of the rehabilitation programmes available to them, and their experiences of accessing stroke rehabilitation across acute and community settings. In the literature the definition of young adults ranges from 18–45 [13–15], 18–55 [8,16,17] and 18–65 years [7,18]. For the purposes of this review we defined young adults as aged between 18 to 45 years. Methods The scoping review approach was used to capture and to summarise the body of literature on young adults’ experiences of stroke and stroke rehabilitation from a broad perspective and in a range of settings. The review was structured on Arksey and O’Malley’s [19] methodological framework for scoping studies, which was further developed by Levac et al. [20]. The framework has six stages: 1) identifying the research question, 2) identifying relevant studies, 3) study selection, 4) charting the data, 5) collating, summarising and reporting the results and 6) consultation. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Review (PRISMA-ScR) guidelines [21] was followed. The review protocol was not published but is available on request. Stage 1: Identifying the research question The scoping review set out to answer the following questions: What is the impact of stroke on young adults? What are the focus and the expected outcomes of stroke rehabilitation in young adults? What are young adults’ experiences of stroke rehabilitation care in acute and health and social care settings? Specific operational definitions and search terms were established in relation to the research questions, which included the rehabilitation settings and the rehabilitation scope. These operational definitions and search terms are provided in S1 Table. Stage 2: Identifying relevant studies A comprehensive search strategy was developed to gather the potentially relevant literature published in English over the period 2000–2022. The following databases were searched: Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, Excerpta Medica database (EMBASE), PsycINFO, Applied Social Sciences Index and Abstracts (ASSIA), Allied and Complementary Medicine Database (AMED), Physiotherapy Evidence Database (PEDro), Cochrane Library and Web of Science. Grey literature was sought through Google Scholar to identify material from the websites of networks, organisations and charities related to stroke. Hand searches were undertaken on the reference lists of the included articles and grey literature to seek any further relevant items. The full search strategy can be found in the (S2 Table). Stage 3: Study selection The retrieved articles were considered for inclusion if they were relevant to the aims of the scoping review. All types of publications were considered for inclusion i.e. journal articles, guidelines, books and editorials ensuring that the broadest range of literature was accessed. This review followed the approach of searching the wide spectrum of available literature. This scoping review approach focusses on identifying the broadest range of literature available on a topic regardless of the methodological quality of the articles [19]. Articles that did not report on the experiences of young adults (18–45 years) in stroke rehabilitation or did not include stroke patients within this age group in their rehabilitation programme were excluded. Only publications written in English language were included. All references derived from the search strategy were imported into the Rayyan software for systematic reviews [22]. Two groups of reviewers (AFP and CCl; HC and LA) screened the titles and abstracts against the inclusion and exclusion criteria (Table 1) with reasons for exclusions noted. Consensus between reviewers was reached through discussion. Download: PPT PowerPoint slide PNG larger image TIFF original image Table 1. Inclusion and exclusion criteria. https://doi.org/10.1371/journal.pone.0279523.t001 Stage 4: Charting the data Data extraction was performed using a ’descriptive-analytical’ method for extracting and summarising the information [19]. General information of each included article was collected to provide context, as well as participants’ characteristics, such as age, stroke type and time since stroke onset. Only the subset of data related to young stroke survivors (18–45 years) was extracted in articles where the range of participants’ ages extended beyond this. Articles were classified into two main groups to facilitate data organisation: (1) young adults’ general experiences of stroke and rehabilitation care (articles that did not explicitly describe an intervention or rehabilitation programme); and (2) young adults’ experiences of particular stroke rehabilitation programmes. For the latter group, the data extraction framework was informed by the logic of realist synthesis using Pawson and Tilley’s context-mechanism-outcome (CMO) heuristic tools [23]. Information was collected regarding (1) the programme name, (2) the contexts (C), (3) the underlying mechanisms (M), and (4) the outcomes (O) of rehabilitation for the young stroke survivors [24,25]. Context referred to circumstances related to a stroke rehabilitation programme that had an impact on outcome [26]. Mechanism referred to resources offered by a stroke rehabilitation programme and how stroke survivors responded to these resources [27]. Outcome in this review included both short and long-term outcomes. As this review aimed to map the existing literature on the lived rehabilitation care experiences of young adults post stroke informed by realist thinking, it did not seek to identify realist programme theories to provide causal explanation of how a programme works or fails in a given context [28]. Instead, the CMO heuristic tools were employed to collate and present the results. Data extraction was undertaken by two independent reviewers (AFP, CCl) and the results were compared to assess for consistency and resolution of discrepancies by discussion within the core team (AFP, CCl, LA, HRC, CC). Stage 5: Collating, summarising and reporting the results The PRISMA Extension for Scoping Reviews (PRISMA-ScR) checklist was followed in preparing the review report (S3 Table) [21]. A PRISMA diagram [29] was used to summarise the selection process. The review findings are reported and described under three sections that addressed the review questions: (1) the impact of stroke on young adults; (2) the focus and the expected outcomes of stroke rehabilitation for young adults; and (3) young adults’ experiences of stroke rehabilitation. Stage 6: Consultation The scoping review was part of a larger research project aiming to explore the range of young adults’ experiences following stroke through their own digital accounts and the published literature, in relation to the formal and informal services available to support them (YARNS project) [30]. The Nursing Studies Ethics Research Panel of the University of Edinburgh approved the study on March 3rd, 2020 (Ref: Staff 173). A patient and public involvement (PPI) group of seven people with personal experience of young stroke advised on all aspects of the YARNS project and acted as ’critical friends’. Stakeholder consultation was undertaken through regular online meetings with the YARNS project partners, research team and the PPI group to provide critical comment related to their experiences on the findings of the preliminary analysis of the scoping review. Stage 1: Identifying the research question The scoping review set out to answer the following questions: What is the impact of stroke on young adults? What are the focus and the expected outcomes of stroke rehabilitation in young adults? What are young adults’ experiences of stroke rehabilitation care in acute and health and social care settings? Specific operational definitions and search terms were established in relation to the research questions, which included the rehabilitation settings and the rehabilitation scope. These operational definitions and search terms are provided in S1 Table. Stage 2: Identifying relevant studies A comprehensive search strategy was developed to gather the potentially relevant literature published in English over the period 2000–2022. The following databases were searched: Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, Excerpta Medica database (EMBASE), PsycINFO, Applied Social Sciences Index and Abstracts (ASSIA), Allied and Complementary Medicine Database (AMED), Physiotherapy Evidence Database (PEDro), Cochrane Library and Web of Science. Grey literature was sought through Google Scholar to identify material from the websites of networks, organisations and charities related to stroke. Hand searches were undertaken on the reference lists of the included articles and grey literature to seek any further relevant items. The full search strategy can be found in the (S2 Table). Stage 3: Study selection The retrieved articles were considered for inclusion if they were relevant to the aims of the scoping review. All types of publications were considered for inclusion i.e. journal articles, guidelines, books and editorials ensuring that the broadest range of literature was accessed. This review followed the approach of searching the wide spectrum of available literature. This scoping review approach focusses on identifying the broadest range of literature available on a topic regardless of the methodological quality of the articles [19]. Articles that did not report on the experiences of young adults (18–45 years) in stroke rehabilitation or did not include stroke patients within this age group in their rehabilitation programme were excluded. Only publications written in English language were included. All references derived from the search strategy were imported into the Rayyan software for systematic reviews [22]. Two groups of reviewers (AFP and CCl; HC and LA) screened the titles and abstracts against the inclusion and exclusion criteria (Table 1) with reasons for exclusions noted. Consensus between reviewers was reached through discussion. Download: PPT PowerPoint slide PNG larger image TIFF original image Table 1. Inclusion and exclusion criteria. https://doi.org/10.1371/journal.pone.0279523.t001 Stage 4: Charting the data Data extraction was performed using a ’descriptive-analytical’ method for extracting and summarising the information [19]. General information of each included article was collected to provide context, as well as participants’ characteristics, such as age, stroke type and time since stroke onset. Only the subset of data related to young stroke survivors (18–45 years) was extracted in articles where the range of participants’ ages extended beyond this. Articles were classified into two main groups to facilitate data organisation: (1) young adults’ general experiences of stroke and rehabilitation care (articles that did not explicitly describe an intervention or rehabilitation programme); and (2) young adults’ experiences of particular stroke rehabilitation programmes. For the latter group, the data extraction framework was informed by the logic of realist synthesis using Pawson and Tilley’s context-mechanism-outcome (CMO) heuristic tools [23]. Information was collected regarding (1) the programme name, (2) the contexts (C), (3) the underlying mechanisms (M), and (4) the outcomes (O) of rehabilitation for the young stroke survivors [24,25]. Context referred to circumstances related to a stroke rehabilitation programme that had an impact on outcome [26]. Mechanism referred to resources offered by a stroke rehabilitation programme and how stroke survivors responded to these resources [27]. Outcome in this review included both short and long-term outcomes. As this review aimed to map the existing literature on the lived rehabilitation care experiences of young adults post stroke informed by realist thinking, it did not seek to identify realist programme theories to provide causal explanation of how a programme works or fails in a given context [28]. Instead, the CMO heuristic tools were employed to collate and present the results. Data extraction was undertaken by two independent reviewers (AFP, CCl) and the results were compared to assess for consistency and resolution of discrepancies by discussion within the core team (AFP, CCl, LA, HRC, CC). Stage 5: Collating, summarising and reporting the results The PRISMA Extension for Scoping Reviews (PRISMA-ScR) checklist was followed in preparing the review report (S3 Table) [21]. A PRISMA diagram [29] was used to summarise the selection process. The review findings are reported and described under three sections that addressed the review questions: (1) the impact of stroke on young adults; (2) the focus and the expected outcomes of stroke rehabilitation for young adults; and (3) young adults’ experiences of stroke rehabilitation. Stage 6: Consultation The scoping review was part of a larger research project aiming to explore the range of young adults’ experiences following stroke through their own digital accounts and the published literature, in relation to the formal and informal services available to support them (YARNS project) [30]. The Nursing Studies Ethics Research Panel of the University of Edinburgh approved the study on March 3rd, 2020 (Ref: Staff 173). A patient and public involvement (PPI) group of seven people with personal experience of young stroke advised on all aspects of the YARNS project and acted as ’critical friends’. Stakeholder consultation was undertaken through regular online meetings with the YARNS project partners, research team and the PPI group to provide critical comment related to their experiences on the findings of the preliminary analysis of the scoping review. Results Search outcome The study selection process is summarised in Fig 1. From a total of 9320 identified articles, 404 were considered potentially relevant following title and abstract screening. A further 319 articles were excluded after full-text screening, leaving a final result of 85 articles included in this review. Download: PPT PowerPoint slide PNG larger image TIFF original image Fig 1. PRISMA flow diagram for study selection [29]. https://doi.org/10.1371/journal.pone.0279523.g001 The general characteristics of the included literature are summarised in Table 2. Download: PPT PowerPoint slide PNG larger image TIFF original image Table 2. Summary of included studies. https://doi.org/10.1371/journal.pone.0279523.t002 Characteristics of included literature From Table 2 it can be noted that 301 young adults with stroke out of the 1626 total adult stroke sample were identified in the included literature, and 47 of the 85 articles had only one or two young stroke adults in their sample. The summary characteristics of included literature are presented in Table 3. Most studies originated from the United Kingdom (n = 31, 36.5%) and Australia (n = 19, 22.4%). Of the 85 articles, 39 (45.9%) were published between 2015 and 2022, suggesting a growing interest in the topic area. Qualitative research studies made up over three quarters of the articles (n = 66, 77.7%). Stroke rehabilitation in the studies was delivered mainly in community settings (n = 45, 52.9%). Download: PPT PowerPoint slide PNG larger image TIFF original image Table 3. Summary characteristics of included literature. https://doi.org/10.1371/journal.pone.0279523.t003 The impact of stroke on young adults The impact of stroke on young adults was reported in 39 articles. Both negative and positive consequences were identified. These results are presented in two groups: (1) studies reporting negative consequences and (2) studies reporting positive consequences. Studies reporting negative consequences. The negative consequences of stroke on young adults are presented under the following categories: physical, financial, social and psychological impacts. Physical impacts. The most commonly reported physical impact of stroke was related to changes in body and brain function, such as movement limitations [9,32,74,83], communication problems [35,41,45,76,104] and memory deficits [35]. The influence of physical problems on performance and function seemed to be construed by young adults as a loss of self-identity as they expressed that they were not the same person following stroke [9,16,32,37,77,91]. Several young adults also spoke of their worry that physical disability would affect how other people perceived their body appearance [39,83]. When considering overall differences, participants explained how their energy levels had reduced after having a stroke. They said they “feel tired all the time” or one said, “I feel like I could just lie down all day” [105]. Financial impacts. Young adults who had no financial security reported financial consequences following stroke. They suffered from loss of income due to being unable to return to work [9,35,41,64,75,82,91,95]. Several young adults said that they were not able to access income support due to their invisible disabilities and that they were deemed able to work [82]. As a result, many of them relied on personal savings and financial support from their family [82]. Importantly, young adults attributed their low attendance at rehabilitation programmes to their financial hardships [82]. Social impacts. The social consequences of stroke in young adults were found in their relationships with their spouses or families, within their social circles and with the wider society. Stroke was deemed as altering marital dynamics resulting from a loss of sexual functioning [37,50] and role change of the stroke survivor from spouse to care recipient [9,50]. Marital or partner relationship disruptions were frequently reported in the literature [37,49,64,91,95]. Some examples were a man being left by his wife after his stroke [91] and a breakup between a young woman with a baby and her fiancé following her stroke [49]. An ethnographic study also found that husbands were more likely to leave if their wives had a stroke [64]. These findings further highlighted stroke’s profound impact on marriage and relationships. The reported impact of stroke on family dynamics was related to physical disability, emotional changes and communication issues following stroke. One young man explained that his stroke limited his ability to interact with his little children, such as playing or carrying them [9]. Several young adults mentioned that they became easily irritated post-stroke and often exhibited anger and temper towards their children and family members [37,91]. A young woman with dysarthria was frustrated when her children silently watched her when she was speaking [45]. Another young adult said she had to send her children away when they were causing her stress and this impacted on her parenting style [105]. Young adults tended to refrain from socialising activities after stroke. They reported that they got exhausted quickly [9,74,100] and they would avoid crowds and noisy places [37,89]. However, having less social interaction could lead to feeling isolated [74,91]. In one case, a man mentioned that he had invited some unknown callers to come inside his house in his desperation to talk to someone after being discharged from the hospital [91]: When I had the stroke and came home… nobody came… I was that desperate to talk to people, and I know it sounds awful this, but I got a knock on the door by [some unkown callers] and I invited them in for a cup of tea and a chat because they were the only people that came. [91, p6] Social interaction could be challenging for young adults following stroke. Invisible disabilities, particularly cognitive disabilities, were perceived as being dismissed by other people [37,39]. Some young people also reported that people mistakenly assumed that they were drunk [37]. They also reported their experiences of being socially stigmatised, as it was assumed that their stroke was caused by cigarette smoking or drug use [91]. Young adults following stroke felt stigmatised by a condition that was expected only in older adults. They reported disbelief regarding their stroke diagnosis, claiming that stroke was not supposed to affect young and fit people with healthy lifestyles [16,32,39]. Young adults seemed not to associate the symptoms they experienced as a sign of stroke, nor were they aware that they had had a stroke [32,52,89]. Some examples included dismissing slurred speech as a sign of tiredness, rather than stroke [32], and rejecting a friends’ advice to go to hospital and going home instead [89]. Young adults who sought help at the hospital were often asked to go home by the healthcare staff as their stroke signs were misinterpreted, resulting in delayed treatment. Some examples included severe headache being diagnosed as an inner ear infection and vomiting as being caused by drug use [82]. A young adult reported that she given another appointment in a week despite the computerised tomography (CT) scan confirming her stroke [32]: And he [the radiologist] held up some x-rays and marked something and said that was a blood, what do you call it? A blood clot. And "You had a stroke. We’ll make an appointment for next week" and of course I went "Yes, sure" I was totally out of it, hadn’t grasped what he just had told me and then I took the CT- pictures…and "OK, see you next week then" and I went out and I was there with a friend and told her everything and she went "Hey, XXX! Why on earth are you still here? I thought you’d had a stroke, don’t you have to get taken in to hospital or something?" "No idea." [32, p155] Psychological impacts. Some young adults spoke of the psychological impacts of stroke, their fear of recurrent stroke [32,42,91] and death [18,43]. Many young people expressed their grief over their stroke diagnosis with common feelings of denial [9,32,39,51,91,95], bargaining [77], and depression [39,43,49,91]. Several young adults described their grief as a sudden loss of their active self or the death of their old self [9]. Bargaining in young adults was related to an expression of hope that their physical limitations after stroke could be ‘repaired’ [77]: eh… right now, this hand is not supposed to function. It will require help from the left hand…so there were many such things that–That you in some way became used to… strangely enough. And it probably led to that I felt that–that things worked well. [77, p310] Depression appeared to be a frequent psychological issue in the literature among the young adults following stroke, with anti-depressants prescribed to deal with their depression [43,47,77] Young adults also conveyed their frustration associated with their whole stroke journey. The frustration was apparent when they received their first stroke diagnosis, returning home, performing personal care activities or daily routines, and maintaining their relationships [8,9,35,37,48,66,88,91]. A few young adults reported experiencing fatigue when performing light jobs or daily tasks at work [35,50,100]. They also expressed that their reliance on significant others, or other people, post stroke for everyday activities led to feeling vulnerable [9,32,37,41,46,64,76,82,102] Studies reporting positive consequences. Positive impacts of stroke were reported in 11 of the 85 articles. Young adults said that they appreciated life more following stroke as they were still alive [9,32,100]. Stroke was also considered as shifting their life priorities to focus more on their well-being, some examples being through relaxing activities such as handicrafts and cuddling with pets [99], and learning to practice their spiritual gratitude [32]. Having more time with their spouse and children was seen as a positive impact of stroke [9,49,80], as well as being more engaged with their community [49]. Moreover, young adults shared how they developed personal strength throughout their stroke journey [9,32,41,76,84,88,91], for instance, through humour [91] and by keep pushing and trying to overcome obstacles that they encountered [84,88]. The focus and the expected outcomes of stroke rehabilitation for young adults In the 85 included articles, only 29 of them specifically evaluated existing rehabilitation programmes [31,33,38,40,44,47,55,57–59,61–63,65,67–72,78,81,86,87,89,92,93,101,103]. The findings of the young adults’ experiences are presented in the context-mechanism-outcome (CMO) configuration and summarised in Table 4. Download: PPT PowerPoint slide PNG larger image TIFF original image Table 4. Studies of evaluations of programmes for stroke rehabilitation of young adults (n = 29). https://doi.org/10.1371/journal.pone.0279523.t004 In general, stroke rehabilitation programmes focused on three main outcomes, physical, psychological and wellbeing of stroke survivors. These were categorised into four different types of programme, (1) physical, (2) psychological and well-being, (3) neuro-pharmacological and (4) integrated. Physical related programmes included stroke rehabilitation programmes that focused on regaining strength in movement, sensorimotor function of upper and lower limb, aerobic endurance, balance, and coordination [33,58,61,62,65,67,69,70,78,92,93,103]. The expected outcomes were improved strength, balance, and mobility. They measured indicators such as stroke survivors’ velocity, endurance, and peak oxygen uptake. The tools used to measure motor functions were the action research arm test (ARAT) and Wolf motor function test (WMFT). The stroke impact scale (SIS) was employed to measure activities of daily living, mobility, and participation. Although the focus from these types of intervention is physical outcomes, it should be noted that the social aspect of the programmes, such as interactions with peers, serve as a mechanism that brings positive impacts on the psychological state of young adults, for instance, increased self-confidence. Participants also highlighted three limitations of physical-related programmes in stroke rehabilitation, including short duration, late start of the programme, and lower priority on sensory issues. Psychological related stroke rehabilitation programmes addressed psychological and social problems as well as promoting the well-being of stroke survivors, and included communication issues [38,40,44,47,55,57,63,72,81,86,87,89,101,111]. The programme outcomes resulted in improved quality of life and well-being. Neuro-pharmacological related intervention referred to programmes that used drugs to improve neuro function, such as attention and initiation [31]. Integrated programmes refer to stroke programmes that included more than two stroke services or healthcare teams, such as hospitals, work support agencies, occupational therapist, speech pathologist, and physical therapist [59,68,71]. These types of programme mainly focused on preparing young adults with stroke return to work. Lastly, our findings suggest that each stroke rehabilitation programme operated in a different context. The context in which each programme was embedded was likely to influence the outcome of the programme. Therefore, it is important to consider these contexts when implementing stroke rehabilitation programmes for young adults. Analysis of the societal health and welfare circumstances in which these rehabilitation programs are embedded is beyond the remit of this review. Young adults’ experiences of stroke rehabilitation Acute settings. Of the 85 included papers, 29 took place in acute settings, including inpatient and inpatient rehabilitation facilities. Twenty four of these 29 articles reported the experiences of stroke rehabilitation in the acute setting among young adults. These experiences were related to staff-patient relationships, routines and environment, and age appropriate stroke care. Patient-staff relationships. The relationship between young adults with stroke and healthcare professionals has been identified as having a substantial influence on their experience as patients in acute settings [10]. Many young adults spoke of their satisfaction with their inpatient experience and highlighted how the care offered by the healthcare staff made them feel safe, comfortable, and reassured regarding their stroke recovery [52,75,77]. Trust was deemed as crucial before young adults could confide in staff [38]. Loss of independence and control were issues identified by young adults, and related to their inability to perform activities without staff assistance [66,81,102]. Therefore, empathy and emotional support from healthcare staff were highly valued by young adults [8,102]. Judgemental comments about their conditions were reported as negative and upsetting by many young adults [8,32,102]. Several also spoke of their negative experiences associated with the situations where their individual preferences were not taken into account by the healthcare staff [81,82,102]. Young adults’ participation in decision making appeared to be accepted as a positive experience, particularly in discharge planning. In one case, a patient was involved in the decision making and invited to attend the multidisciplinary team meetings [53]. This involvement resulted in an agreement of living in the community after hospital discharge, whereas in the first place, the patient intended to live in his previous flat despite his disability [53]. One young patient reported that home visits a week before discharge were helpful to provide expectations of life at home and what adjustments were needed to their physical environment [71]. Effective communication between patient and staff was crucial in improving young adults’ experiences in acute care. The discussion between staff and young adults about their hopes after stroke may promote optimistic thoughts [40]. The following hopes were identified: return to education, embracing spirituality and staying connected with their support system, such as friends and families [40]. Negative experiences related to a lack of communication between young adults and staff were indicated by a lack of discussion of personal goals [85], no rehabilitation assessment before hospital discharge [66], and not understanding the rehabilitation process [34]. Young adults also reported difficulty in processing information received in hospital during the acute phase of their stroke, particularly in understanding the Latin terminology and jargon used by healthcare professionals [44]. Routines and environment. Many young adults with stroke spoke of their routines and the environment of the inpatient rehabilitation setting. They commonly experienced boredom as a result of few activities during their hospital stay [60,81]. Participating in activities was reported as a way to occupy young adults’ time, such as regular rehabilitation training [66] and attending reading sessions [38]. Rehabilitation training was favoured by young adults and the time after the exercise was considered as ‘boring’ [66,102]. A patient also reported feeling optimistic and hopeful after completing an eight-week physical rehabilitation programme [93]. Several patients highlighted that training intensity and duration should be increased [72,93]. With respect to the environment, staying in a single room could feel isolating: ’a prison cell’ [102]. Nevertheless, sharing a room could lead to lack of privacy and the busy environment was described like ’a train station’ [86]. Several young adults spoke of difficulties sleeping at the hospital due to constant noise and staff carrying out observations [8,107]. Age-appropriate stroke care. The provision of appropriate stroke care in terms of patient age group and conditions was central to young adults’ experiences in the acute setting. Young adults often reported that they were admitted to an inpatient setting with no other patients of the same age group. This led to feelings of ‘no camaraderie’ and not being able to share experiences with other patients, which they felt was important [8,34,109]. Being the only young person in inpatient rehabilitation was reported to trigger feelings of terror, frustration and isolation [32] and depression [39]. Young adults reported that the inpatient facilities were designed for older people instead of young people, particularly in terms of the stroke care goals [8]. Furthermore, they mentioned that the information provided in the hospital was less relevant to young adults, for instance, the use of elderly people’s pictures in the information packs and no information about returning to work, access to income support, driving post stroke and the options for contraception [8]. In contrast, positive feelings were generated from the ability to identify with people with similar conditions. Having a shared understanding with other stroke patients in the care settings was mentioned as psychologically beneficial [8]. Many young adults felt encouraged after listening and speaking to stroke survivors who had gone through situations that they could relate to [8,63]. Community and social care settings. Community and social care settings (beyond inpatient) were reported in 75 out of the 85 articles in this review, with 48 reporting on the rehabilitation experiences of young adults with stroke. These findings are presented under three themes, namely transition from hospital to home, outpatient stroke rehabilitation and community rehabilitation. Transition from hospital to home. The transition of young adults following stroke from inpatient to home care seemed to be a crucial point in their recovery journey. Whilst being discharged home was perceived as a sign of progress towards resuming normality and returning to personal and calm space [46,86], many spoke of the discontinuity of services after their discharge and felt they had ’slipped through the system’ [8]. They felt that they had been forgotten, betrayed and had lost a sense of the safety provided by healthcare staff during their inpatient care [77]. Reported changes included struggles in carrying out activities at home previously assisted by the hospital staff [66] and the physical difference between the home and hospital environment, such as not having a non-slip floor at home [71]. Young adults often made adjustments to achieve their daily living activities and accommodate any limitations resulting from stroke. Reported strategies included prioritising essential activities, completing tasks one by one and choosing relaxing activities above house chores [9,48,97]. Another common approach was finding ways to compensate for physical impairment, such as using a trolley to carry groceries [103] and dedicating more time to complete a task [95]. Other types of adaptation such as writing lists for memory rehabilitation, were also discussed. One young adult described how doing things like writing lists felt like ‘cheating’ but that he was trying to not put pressure on himself [110]. Outpatient stroke rehabilitation. Most young adults following stroke agreed that outpatient rehabilitation helped them to progress their recovery, ranging from occupational therapy, speech and language therapy, functional electrical stimulation (FES), podiatry, to psychological therapy [45,46,65,68,87]. Positive comments were related to increased physical activity levels [47,65,83], improved speech [45], reduced anxiety from practicing relaxation techniques [87] and increased awareness of their own disability and limitation post-stroke [68]. Nevertheless, young adults reported some aspects of the rehabilitation that did not meet their expectations, including a mismatch between their own and healthcare staff’s rehabilitation goal settings or no clear goal setting, a lack of information about realistic timeframes for rehabilitation, or how tiring it could be, a lack of rehabilitation activities beyond mobility function and the short duration of each session [8,70,75]. Young adults described the importance of transparent goal setting in the context to their overall experiences and their feeling of not being in the ‘driver’s seat’, or being understood, showing the need to address the power imbalance between patients and staff [109]. There are a number of medical devices for use in stroke rehabilitation. Young adults using SaeboFlex®; a device for upper limb rehabilitation, described how using the equipment provided them with hope despite the limited evidence on its effectiveness [106]. Other rehabilitation devices such as exoskeletons were also discussed as having limited practical function in particular whether they could be used outside and in public [108]. Occupation seems to be an important part of young adult’s identity in the literature. Looking for jobs following stroke could trigger anxiety [47,68] and not being able to return to work could result in sadness and depression [47,89]. One young adult stated that returning to work was the ’best’ rehabilitation and it provided a sense of returning to normality by going out and interacting with colleagues [90]. However, return-to-work or vocational rehabilitation was reported to be lacking, thus contributing to the psychological and social impact of stroke for young adults [75,105]. Young adults appeared to show determination, motivation and enthusiasm for stroke rehabilitation beyond the hospital setting. These characteristics were evidenced by high attendance rates and continuous engagement of young adults in their rehabilitation programmes [41,59,69]. Many young adults reported that they wanted to challenge themselves and hard work was required to progress [67,84,88]. A young man articulated his motivation to improve his health status and to control stroke risk factors by managing his blood pressure, whereas in the past this was not his concern [101]. Nevertheless, the repetitive nature of rehabilitation training could also lead to exasperation [89]. Many young adults spoke of their experiences of follow-up services related to information provision and content. Several mentioned receiving limited information from healthcare staff about their post-stroke condition, for instance, the physical, emotional and behavioural changes [8], or when their next brain scan would be and which professional should be contacted for advice [79]. A comprehensive list of accessible services and the information about returning to work and accessing welfare, family, or income support were desired among young adults [8,14,34,82]. They also highlighted the importance of receiving practical advice and understandable information from healthcare professionals [8,44]. Young adults appeared to experience challenges in accessing a range of stroke services in social care settings. They experienced extended delays [8,79] or no access at all to particular stroke rehabilitation services, such as psychological and community-based support [8,66]. Other young adults also mentioned having inconsistent meetings with their therapists and difficulties in reaching out to them [79]. A strict schedule of follow-up services was deemed as limiting as young adults had a range of family and work responsibilities that they needed to work around and negotiate with their spouse [79]. The relationship between young people with stroke and healthcare professionals in the context of social care settings appeared to impact on their recovery journey. Healthcare staff who provided reassurance, encouragement and motivation were reported to empower young stroke survivors in achieving higher mobilisation goals in their recovery [52,88]. In contrast, insensitive and discouraging comments from healthcare staff, for instance, stating that the patient would not be able to drive anymore, were reported to be upsetting and diminishing their hope [8]. Several young adults spoke of their plans after completing the rehabilitation programme. The reported short-term plans included returning to work as a volunteer in a day centre and moving to independent accommodation after living with her carers following stroke [67]. A long-term goal described by a young woman was to be able to dance at her children’s wedding [80]. However, cessation of rehabilitation services in the community setting seems to bring tension to young adults with stroke. Young adults expressed their concern about ending their outpatient physiotherapy sessions [52]. After the rehabilitation services were withdrawn, feelings of isolation and abandonment were commonly reported [89,94]. Nonetheless, having shared experiences with people in the community helped fill the gap that was missing from the withdrawn services [89]. Community rehabilitation. Many young adults reported positive benefits of participating in a community group [8,55]. Rehabilitation programmes in community settings allowed young adults to overcome and progress beyond their set self-boundaries [67]. Group interaction with other stroke survivors and learning from their successes were reported to motivate young adults to push themselves beyond their perceived limits [97]. Young adults spoke of psychological benefits of sharing similar experiences with other young people, providing peer support and encouragement, instilling hope and improving self-esteem through the socialising process [8,55]. These similar findings were also reported by aphasic young adults. They spoke of enjoying their participation in community groups, social, art and craft activities, despite having communication difficulties [76]. Other young adults with aphasia reported the benefit of volunteering in building self-confidence and independence [57]. The group composition appeared to influence young adults’ rehabilitation experiences in the community context. They expressed experiencing difficulties in relating to older people with stroke due to the difference in life stage, including lifestyles and interests [72,79]. In one case of a young woman was admitted to a nursing home, she spoke of her feelings of estrangement being surrounded by older adults [18]. The delivery location of community rehabilitation seemed to be an important aspect of young adults’ experiences. They mentioned that the community building used to deliver the rehabilitation service introduced them to other facilities they could access beyond the programme, for example, the gym and the pools on the same site [67]. The ’youthful’ ambience of the rehabilitation centre that was described as supportive as she did not feel like a patient any more [79]. Search outcome The study selection process is summarised in Fig 1. From a total of 9320 identified articles, 404 were considered potentially relevant following title and abstract screening. A further 319 articles were excluded after full-text screening, leaving a final result of 85 articles included in this review. Download: PPT PowerPoint slide PNG larger image TIFF original image Fig 1. PRISMA flow diagram for study selection [29]. https://doi.org/10.1371/journal.pone.0279523.g001 The general characteristics of the included literature are summarised in Table 2. Download: PPT PowerPoint slide PNG larger image TIFF original image Table 2. Summary of included studies. https://doi.org/10.1371/journal.pone.0279523.t002 Characteristics of included literature From Table 2 it can be noted that 301 young adults with stroke out of the 1626 total adult stroke sample were identified in the included literature, and 47 of the 85 articles had only one or two young stroke adults in their sample. The summary characteristics of included literature are presented in Table 3. Most studies originated from the United Kingdom (n = 31, 36.5%) and Australia (n = 19, 22.4%). Of the 85 articles, 39 (45.9%) were published between 2015 and 2022, suggesting a growing interest in the topic area. Qualitative research studies made up over three quarters of the articles (n = 66, 77.7%). Stroke rehabilitation in the studies was delivered mainly in community settings (n = 45, 52.9%). Download: PPT PowerPoint slide PNG larger image TIFF original image Table 3. Summary characteristics of included literature. https://doi.org/10.1371/journal.pone.0279523.t003 The impact of stroke on young adults The impact of stroke on young adults was reported in 39 articles. Both negative and positive consequences were identified. These results are presented in two groups: (1) studies reporting negative consequences and (2) studies reporting positive consequences. Studies reporting negative consequences. The negative consequences of stroke on young adults are presented under the following categories: physical, financial, social and psychological impacts. Physical impacts. The most commonly reported physical impact of stroke was related to changes in body and brain function, such as movement limitations [9,32,74,83], communication problems [35,41,45,76,104] and memory deficits [35]. The influence of physical problems on performance and function seemed to be construed by young adults as a loss of self-identity as they expressed that they were not the same person following stroke [9,16,32,37,77,91]. Several young adults also spoke of their worry that physical disability would affect how other people perceived their body appearance [39,83]. When considering overall differences, participants explained how their energy levels had reduced after having a stroke. They said they “feel tired all the time” or one said, “I feel like I could just lie down all day” [105]. Financial impacts. Young adults who had no financial security reported financial consequences following stroke. They suffered from loss of income due to being unable to return to work [9,35,41,64,75,82,91,95]. Several young adults said that they were not able to access income support due to their invisible disabilities and that they were deemed able to work [82]. As a result, many of them relied on personal savings and financial support from their family [82]. Importantly, young adults attributed their low attendance at rehabilitation programmes to their financial hardships [82]. Social impacts. The social consequences of stroke in young adults were found in their relationships with their spouses or families, within their social circles and with the wider society. Stroke was deemed as altering marital dynamics resulting from a loss of sexual functioning [37,50] and role change of the stroke survivor from spouse to care recipient [9,50]. Marital or partner relationship disruptions were frequently reported in the literature [37,49,64,91,95]. Some examples were a man being left by his wife after his stroke [91] and a breakup between a young woman with a baby and her fiancé following her stroke [49]. An ethnographic study also found that husbands were more likely to leave if their wives had a stroke [64]. These findings further highlighted stroke’s profound impact on marriage and relationships. The reported impact of stroke on family dynamics was related to physical disability, emotional changes and communication issues following stroke. One young man explained that his stroke limited his ability to interact with his little children, such as playing or carrying them [9]. Several young adults mentioned that they became easily irritated post-stroke and often exhibited anger and temper towards their children and family members [37,91]. A young woman with dysarthria was frustrated when her children silently watched her when she was speaking [45]. Another young adult said she had to send her children away when they were causing her stress and this impacted on her parenting style [105]. Young adults tended to refrain from socialising activities after stroke. They reported that they got exhausted quickly [9,74,100] and they would avoid crowds and noisy places [37,89]. However, having less social interaction could lead to feeling isolated [74,91]. In one case, a man mentioned that he had invited some unknown callers to come inside his house in his desperation to talk to someone after being discharged from the hospital [91]: When I had the stroke and came home… nobody came… I was that desperate to talk to people, and I know it sounds awful this, but I got a knock on the door by [some unkown callers] and I invited them in for a cup of tea and a chat because they were the only people that came. [91, p6] Social interaction could be challenging for young adults following stroke. Invisible disabilities, particularly cognitive disabilities, were perceived as being dismissed by other people [37,39]. Some young people also reported that people mistakenly assumed that they were drunk [37]. They also reported their experiences of being socially stigmatised, as it was assumed that their stroke was caused by cigarette smoking or drug use [91]. Young adults following stroke felt stigmatised by a condition that was expected only in older adults. They reported disbelief regarding their stroke diagnosis, claiming that stroke was not supposed to affect young and fit people with healthy lifestyles [16,32,39]. Young adults seemed not to associate the symptoms they experienced as a sign of stroke, nor were they aware that they had had a stroke [32,52,89]. Some examples included dismissing slurred speech as a sign of tiredness, rather than stroke [32], and rejecting a friends’ advice to go to hospital and going home instead [89]. Young adults who sought help at the hospital were often asked to go home by the healthcare staff as their stroke signs were misinterpreted, resulting in delayed treatment. Some examples included severe headache being diagnosed as an inner ear infection and vomiting as being caused by drug use [82]. A young adult reported that she given another appointment in a week despite the computerised tomography (CT) scan confirming her stroke [32]: And he [the radiologist] held up some x-rays and marked something and said that was a blood, what do you call it? A blood clot. And "You had a stroke. We’ll make an appointment for next week" and of course I went "Yes, sure" I was totally out of it, hadn’t grasped what he just had told me and then I took the CT- pictures…and "OK, see you next week then" and I went out and I was there with a friend and told her everything and she went "Hey, XXX! Why on earth are you still here? I thought you’d had a stroke, don’t you have to get taken in to hospital or something?" "No idea." [32, p155] Psychological impacts. Some young adults spoke of the psychological impacts of stroke, their fear of recurrent stroke [32,42,91] and death [18,43]. Many young people expressed their grief over their stroke diagnosis with common feelings of denial [9,32,39,51,91,95], bargaining [77], and depression [39,43,49,91]. Several young adults described their grief as a sudden loss of their active self or the death of their old self [9]. Bargaining in young adults was related to an expression of hope that their physical limitations after stroke could be ‘repaired’ [77]: eh… right now, this hand is not supposed to function. It will require help from the left hand…so there were many such things that–That you in some way became used to… strangely enough. And it probably led to that I felt that–that things worked well. [77, p310] Depression appeared to be a frequent psychological issue in the literature among the young adults following stroke, with anti-depressants prescribed to deal with their depression [43,47,77] Young adults also conveyed their frustration associated with their whole stroke journey. The frustration was apparent when they received their first stroke diagnosis, returning home, performing personal care activities or daily routines, and maintaining their relationships [8,9,35,37,48,66,88,91]. A few young adults reported experiencing fatigue when performing light jobs or daily tasks at work [35,50,100]. They also expressed that their reliance on significant others, or other people, post stroke for everyday activities led to feeling vulnerable [9,32,37,41,46,64,76,82,102] Studies reporting positive consequences. Positive impacts of stroke were reported in 11 of the 85 articles. Young adults said that they appreciated life more following stroke as they were still alive [9,32,100]. Stroke was also considered as shifting their life priorities to focus more on their well-being, some examples being through relaxing activities such as handicrafts and cuddling with pets [99], and learning to practice their spiritual gratitude [32]. Having more time with their spouse and children was seen as a positive impact of stroke [9,49,80], as well as being more engaged with their community [49]. Moreover, young adults shared how they developed personal strength throughout their stroke journey [9,32,41,76,84,88,91], for instance, through humour [91] and by keep pushing and trying to overcome obstacles that they encountered [84,88]. Studies reporting negative consequences. The negative consequences of stroke on young adults are presented under the following categories: physical, financial, social and psychological impacts. Physical impacts. The most commonly reported physical impact of stroke was related to changes in body and brain function, such as movement limitations [9,32,74,83], communication problems [35,41,45,76,104] and memory deficits [35]. The influence of physical problems on performance and function seemed to be construed by young adults as a loss of self-identity as they expressed that they were not the same person following stroke [9,16,32,37,77,91]. Several young adults also spoke of their worry that physical disability would affect how other people perceived their body appearance [39,83]. When considering overall differences, participants explained how their energy levels had reduced after having a stroke. They said they “feel tired all the time” or one said, “I feel like I could just lie down all day” [105]. Financial impacts. Young adults who had no financial security reported financial consequences following stroke. They suffered from loss of income due to being unable to return to work [9,35,41,64,75,82,91,95]. Several young adults said that they were not able to access income support due to their invisible disabilities and that they were deemed able to work [82]. As a result, many of them relied on personal savings and financial support from their family [82]. Importantly, young adults attributed their low attendance at rehabilitation programmes to their financial hardships [82]. Social impacts. The social consequences of stroke in young adults were found in their relationships with their spouses or families, within their social circles and with the wider society. Stroke was deemed as altering marital dynamics resulting from a loss of sexual functioning [37,50] and role change of the stroke survivor from spouse to care recipient [9,50]. Marital or partner relationship disruptions were frequently reported in the literature [37,49,64,91,95]. Some examples were a man being left by his wife after his stroke [91] and a breakup between a young woman with a baby and her fiancé following her stroke [49]. An ethnographic study also found that husbands were more likely to leave if their wives had a stroke [64]. These findings further highlighted stroke’s profound impact on marriage and relationships. The reported impact of stroke on family dynamics was related to physical disability, emotional changes and communication issues following stroke. One young man explained that his stroke limited his ability to interact with his little children, such as playing or carrying them [9]. Several young adults mentioned that they became easily irritated post-stroke and often exhibited anger and temper towards their children and family members [37,91]. A young woman with dysarthria was frustrated when her children silently watched her when she was speaking [45]. Another young adult said she had to send her children away when they were causing her stress and this impacted on her parenting style [105]. Young adults tended to refrain from socialising activities after stroke. They reported that they got exhausted quickly [9,74,100] and they would avoid crowds and noisy places [37,89]. However, having less social interaction could lead to feeling isolated [74,91]. In one case, a man mentioned that he had invited some unknown callers to come inside his house in his desperation to talk to someone after being discharged from the hospital [91]: When I had the stroke and came home… nobody came… I was that desperate to talk to people, and I know it sounds awful this, but I got a knock on the door by [some unkown callers] and I invited them in for a cup of tea and a chat because they were the only people that came. [91, p6] Social interaction could be challenging for young adults following stroke. Invisible disabilities, particularly cognitive disabilities, were perceived as being dismissed by other people [37,39]. Some young people also reported that people mistakenly assumed that they were drunk [37]. They also reported their experiences of being socially stigmatised, as it was assumed that their stroke was caused by cigarette smoking or drug use [91]. Young adults following stroke felt stigmatised by a condition that was expected only in older adults. They reported disbelief regarding their stroke diagnosis, claiming that stroke was not supposed to affect young and fit people with healthy lifestyles [16,32,39]. Young adults seemed not to associate the symptoms they experienced as a sign of stroke, nor were they aware that they had had a stroke [32,52,89]. Some examples included dismissing slurred speech as a sign of tiredness, rather than stroke [32], and rejecting a friends’ advice to go to hospital and going home instead [89]. Young adults who sought help at the hospital were often asked to go home by the healthcare staff as their stroke signs were misinterpreted, resulting in delayed treatment. Some examples included severe headache being diagnosed as an inner ear infection and vomiting as being caused by drug use [82]. A young adult reported that she given another appointment in a week despite the computerised tomography (CT) scan confirming her stroke [32]: And he [the radiologist] held up some x-rays and marked something and said that was a blood, what do you call it? A blood clot. And "You had a stroke. We’ll make an appointment for next week" and of course I went "Yes, sure" I was totally out of it, hadn’t grasped what he just had told me and then I took the CT- pictures…and "OK, see you next week then" and I went out and I was there with a friend and told her everything and she went "Hey, XXX! Why on earth are you still here? I thought you’d had a stroke, don’t you have to get taken in to hospital or something?" "No idea." [32, p155] Psychological impacts. Some young adults spoke of the psychological impacts of stroke, their fear of recurrent stroke [32,42,91] and death [18,43]. Many young people expressed their grief over their stroke diagnosis with common feelings of denial [9,32,39,51,91,95], bargaining [77], and depression [39,43,49,91]. Several young adults described their grief as a sudden loss of their active self or the death of their old self [9]. Bargaining in young adults was related to an expression of hope that their physical limitations after stroke could be ‘repaired’ [77]: eh… right now, this hand is not supposed to function. It will require help from the left hand…so there were many such things that–That you in some way became used to… strangely enough. And it probably led to that I felt that–that things worked well. [77, p310] Depression appeared to be a frequent psychological issue in the literature among the young adults following stroke, with anti-depressants prescribed to deal with their depression [43,47,77] Young adults also conveyed their frustration associated with their whole stroke journey. The frustration was apparent when they received their first stroke diagnosis, returning home, performing personal care activities or daily routines, and maintaining their relationships [8,9,35,37,48,66,88,91]. A few young adults reported experiencing fatigue when performing light jobs or daily tasks at work [35,50,100]. They also expressed that their reliance on significant others, or other people, post stroke for everyday activities led to feeling vulnerable [9,32,37,41,46,64,76,82,102] Studies reporting positive consequences. Positive impacts of stroke were reported in 11 of the 85 articles. Young adults said that they appreciated life more following stroke as they were still alive [9,32,100]. Stroke was also considered as shifting their life priorities to focus more on their well-being, some examples being through relaxing activities such as handicrafts and cuddling with pets [99], and learning to practice their spiritual gratitude [32]. Having more time with their spouse and children was seen as a positive impact of stroke [9,49,80], as well as being more engaged with their community [49]. Moreover, young adults shared how they developed personal strength throughout their stroke journey [9,32,41,76,84,88,91], for instance, through humour [91] and by keep pushing and trying to overcome obstacles that they encountered [84,88]. The focus and the expected outcomes of stroke rehabilitation for young adults In the 85 included articles, only 29 of them specifically evaluated existing rehabilitation programmes [31,33,38,40,44,47,55,57–59,61–63,65,67–72,78,81,86,87,89,92,93,101,103]. The findings of the young adults’ experiences are presented in the context-mechanism-outcome (CMO) configuration and summarised in Table 4. Download: PPT PowerPoint slide PNG larger image TIFF original image Table 4. Studies of evaluations of programmes for stroke rehabilitation of young adults (n = 29). https://doi.org/10.1371/journal.pone.0279523.t004 In general, stroke rehabilitation programmes focused on three main outcomes, physical, psychological and wellbeing of stroke survivors. These were categorised into four different types of programme, (1) physical, (2) psychological and well-being, (3) neuro-pharmacological and (4) integrated. Physical related programmes included stroke rehabilitation programmes that focused on regaining strength in movement, sensorimotor function of upper and lower limb, aerobic endurance, balance, and coordination [33,58,61,62,65,67,69,70,78,92,93,103]. The expected outcomes were improved strength, balance, and mobility. They measured indicators such as stroke survivors’ velocity, endurance, and peak oxygen uptake. The tools used to measure motor functions were the action research arm test (ARAT) and Wolf motor function test (WMFT). The stroke impact scale (SIS) was employed to measure activities of daily living, mobility, and participation. Although the focus from these types of intervention is physical outcomes, it should be noted that the social aspect of the programmes, such as interactions with peers, serve as a mechanism that brings positive impacts on the psychological state of young adults, for instance, increased self-confidence. Participants also highlighted three limitations of physical-related programmes in stroke rehabilitation, including short duration, late start of the programme, and lower priority on sensory issues. Psychological related stroke rehabilitation programmes addressed psychological and social problems as well as promoting the well-being of stroke survivors, and included communication issues [38,40,44,47,55,57,63,72,81,86,87,89,101,111]. The programme outcomes resulted in improved quality of life and well-being. Neuro-pharmacological related intervention referred to programmes that used drugs to improve neuro function, such as attention and initiation [31]. Integrated programmes refer to stroke programmes that included more than two stroke services or healthcare teams, such as hospitals, work support agencies, occupational therapist, speech pathologist, and physical therapist [59,68,71]. These types of programme mainly focused on preparing young adults with stroke return to work. Lastly, our findings suggest that each stroke rehabilitation programme operated in a different context. The context in which each programme was embedded was likely to influence the outcome of the programme. Therefore, it is important to consider these contexts when implementing stroke rehabilitation programmes for young adults. Analysis of the societal health and welfare circumstances in which these rehabilitation programs are embedded is beyond the remit of this review. Young adults’ experiences of stroke rehabilitation Acute settings. Of the 85 included papers, 29 took place in acute settings, including inpatient and inpatient rehabilitation facilities. Twenty four of these 29 articles reported the experiences of stroke rehabilitation in the acute setting among young adults. These experiences were related to staff-patient relationships, routines and environment, and age appropriate stroke care. Patient-staff relationships. The relationship between young adults with stroke and healthcare professionals has been identified as having a substantial influence on their experience as patients in acute settings [10]. Many young adults spoke of their satisfaction with their inpatient experience and highlighted how the care offered by the healthcare staff made them feel safe, comfortable, and reassured regarding their stroke recovery [52,75,77]. Trust was deemed as crucial before young adults could confide in staff [38]. Loss of independence and control were issues identified by young adults, and related to their inability to perform activities without staff assistance [66,81,102]. Therefore, empathy and emotional support from healthcare staff were highly valued by young adults [8,102]. Judgemental comments about their conditions were reported as negative and upsetting by many young adults [8,32,102]. Several also spoke of their negative experiences associated with the situations where their individual preferences were not taken into account by the healthcare staff [81,82,102]. Young adults’ participation in decision making appeared to be accepted as a positive experience, particularly in discharge planning. In one case, a patient was involved in the decision making and invited to attend the multidisciplinary team meetings [53]. This involvement resulted in an agreement of living in the community after hospital discharge, whereas in the first place, the patient intended to live in his previous flat despite his disability [53]. One young patient reported that home visits a week before discharge were helpful to provide expectations of life at home and what adjustments were needed to their physical environment [71]. Effective communication between patient and staff was crucial in improving young adults’ experiences in acute care. The discussion between staff and young adults about their hopes after stroke may promote optimistic thoughts [40]. The following hopes were identified: return to education, embracing spirituality and staying connected with their support system, such as friends and families [40]. Negative experiences related to a lack of communication between young adults and staff were indicated by a lack of discussion of personal goals [85], no rehabilitation assessment before hospital discharge [66], and not understanding the rehabilitation process [34]. Young adults also reported difficulty in processing information received in hospital during the acute phase of their stroke, particularly in understanding the Latin terminology and jargon used by healthcare professionals [44]. Routines and environment. Many young adults with stroke spoke of their routines and the environment of the inpatient rehabilitation setting. They commonly experienced boredom as a result of few activities during their hospital stay [60,81]. Participating in activities was reported as a way to occupy young adults’ time, such as regular rehabilitation training [66] and attending reading sessions [38]. Rehabilitation training was favoured by young adults and the time after the exercise was considered as ‘boring’ [66,102]. A patient also reported feeling optimistic and hopeful after completing an eight-week physical rehabilitation programme [93]. Several patients highlighted that training intensity and duration should be increased [72,93]. With respect to the environment, staying in a single room could feel isolating: ’a prison cell’ [102]. Nevertheless, sharing a room could lead to lack of privacy and the busy environment was described like ’a train station’ [86]. Several young adults spoke of difficulties sleeping at the hospital due to constant noise and staff carrying out observations [8,107]. Age-appropriate stroke care. The provision of appropriate stroke care in terms of patient age group and conditions was central to young adults’ experiences in the acute setting. Young adults often reported that they were admitted to an inpatient setting with no other patients of the same age group. This led to feelings of ‘no camaraderie’ and not being able to share experiences with other patients, which they felt was important [8,34,109]. Being the only young person in inpatient rehabilitation was reported to trigger feelings of terror, frustration and isolation [32] and depression [39]. Young adults reported that the inpatient facilities were designed for older people instead of young people, particularly in terms of the stroke care goals [8]. Furthermore, they mentioned that the information provided in the hospital was less relevant to young adults, for instance, the use of elderly people’s pictures in the information packs and no information about returning to work, access to income support, driving post stroke and the options for contraception [8]. In contrast, positive feelings were generated from the ability to identify with people with similar conditions. Having a shared understanding with other stroke patients in the care settings was mentioned as psychologically beneficial [8]. Many young adults felt encouraged after listening and speaking to stroke survivors who had gone through situations that they could relate to [8,63]. Community and social care settings. Community and social care settings (beyond inpatient) were reported in 75 out of the 85 articles in this review, with 48 reporting on the rehabilitation experiences of young adults with stroke. These findings are presented under three themes, namely transition from hospital to home, outpatient stroke rehabilitation and community rehabilitation. Transition from hospital to home. The transition of young adults following stroke from inpatient to home care seemed to be a crucial point in their recovery journey. Whilst being discharged home was perceived as a sign of progress towards resuming normality and returning to personal and calm space [46,86], many spoke of the discontinuity of services after their discharge and felt they had ’slipped through the system’ [8]. They felt that they had been forgotten, betrayed and had lost a sense of the safety provided by healthcare staff during their inpatient care [77]. Reported changes included struggles in carrying out activities at home previously assisted by the hospital staff [66] and the physical difference between the home and hospital environment, such as not having a non-slip floor at home [71]. Young adults often made adjustments to achieve their daily living activities and accommodate any limitations resulting from stroke. Reported strategies included prioritising essential activities, completing tasks one by one and choosing relaxing activities above house chores [9,48,97]. Another common approach was finding ways to compensate for physical impairment, such as using a trolley to carry groceries [103] and dedicating more time to complete a task [95]. Other types of adaptation such as writing lists for memory rehabilitation, were also discussed. One young adult described how doing things like writing lists felt like ‘cheating’ but that he was trying to not put pressure on himself [110]. Outpatient stroke rehabilitation. Most young adults following stroke agreed that outpatient rehabilitation helped them to progress their recovery, ranging from occupational therapy, speech and language therapy, functional electrical stimulation (FES), podiatry, to psychological therapy [45,46,65,68,87]. Positive comments were related to increased physical activity levels [47,65,83], improved speech [45], reduced anxiety from practicing relaxation techniques [87] and increased awareness of their own disability and limitation post-stroke [68]. Nevertheless, young adults reported some aspects of the rehabilitation that did not meet their expectations, including a mismatch between their own and healthcare staff’s rehabilitation goal settings or no clear goal setting, a lack of information about realistic timeframes for rehabilitation, or how tiring it could be, a lack of rehabilitation activities beyond mobility function and the short duration of each session [8,70,75]. Young adults described the importance of transparent goal setting in the context to their overall experiences and their feeling of not being in the ‘driver’s seat’, or being understood, showing the need to address the power imbalance between patients and staff [109]. There are a number of medical devices for use in stroke rehabilitation. Young adults using SaeboFlex®; a device for upper limb rehabilitation, described how using the equipment provided them with hope despite the limited evidence on its effectiveness [106]. Other rehabilitation devices such as exoskeletons were also discussed as having limited practical function in particular whether they could be used outside and in public [108]. Occupation seems to be an important part of young adult’s identity in the literature. Looking for jobs following stroke could trigger anxiety [47,68] and not being able to return to work could result in sadness and depression [47,89]. One young adult stated that returning to work was the ’best’ rehabilitation and it provided a sense of returning to normality by going out and interacting with colleagues [90]. However, return-to-work or vocational rehabilitation was reported to be lacking, thus contributing to the psychological and social impact of stroke for young adults [75,105]. Young adults appeared to show determination, motivation and enthusiasm for stroke rehabilitation beyond the hospital setting. These characteristics were evidenced by high attendance rates and continuous engagement of young adults in their rehabilitation programmes [41,59,69]. Many young adults reported that they wanted to challenge themselves and hard work was required to progress [67,84,88]. A young man articulated his motivation to improve his health status and to control stroke risk factors by managing his blood pressure, whereas in the past this was not his concern [101]. Nevertheless, the repetitive nature of rehabilitation training could also lead to exasperation [89]. Many young adults spoke of their experiences of follow-up services related to information provision and content. Several mentioned receiving limited information from healthcare staff about their post-stroke condition, for instance, the physical, emotional and behavioural changes [8], or when their next brain scan would be and which professional should be contacted for advice [79]. A comprehensive list of accessible services and the information about returning to work and accessing welfare, family, or income support were desired among young adults [8,14,34,82]. They also highlighted the importance of receiving practical advice and understandable information from healthcare professionals [8,44]. Young adults appeared to experience challenges in accessing a range of stroke services in social care settings. They experienced extended delays [8,79] or no access at all to particular stroke rehabilitation services, such as psychological and community-based support [8,66]. Other young adults also mentioned having inconsistent meetings with their therapists and difficulties in reaching out to them [79]. A strict schedule of follow-up services was deemed as limiting as young adults had a range of family and work responsibilities that they needed to work around and negotiate with their spouse [79]. The relationship between young people with stroke and healthcare professionals in the context of social care settings appeared to impact on their recovery journey. Healthcare staff who provided reassurance, encouragement and motivation were reported to empower young stroke survivors in achieving higher mobilisation goals in their recovery [52,88]. In contrast, insensitive and discouraging comments from healthcare staff, for instance, stating that the patient would not be able to drive anymore, were reported to be upsetting and diminishing their hope [8]. Several young adults spoke of their plans after completing the rehabilitation programme. The reported short-term plans included returning to work as a volunteer in a day centre and moving to independent accommodation after living with her carers following stroke [67]. A long-term goal described by a young woman was to be able to dance at her children’s wedding [80]. However, cessation of rehabilitation services in the community setting seems to bring tension to young adults with stroke. Young adults expressed their concern about ending their outpatient physiotherapy sessions [52]. After the rehabilitation services were withdrawn, feelings of isolation and abandonment were commonly reported [89,94]. Nonetheless, having shared experiences with people in the community helped fill the gap that was missing from the withdrawn services [89]. Community rehabilitation. Many young adults reported positive benefits of participating in a community group [8,55]. Rehabilitation programmes in community settings allowed young adults to overcome and progress beyond their set self-boundaries [67]. Group interaction with other stroke survivors and learning from their successes were reported to motivate young adults to push themselves beyond their perceived limits [97]. Young adults spoke of psychological benefits of sharing similar experiences with other young people, providing peer support and encouragement, instilling hope and improving self-esteem through the socialising process [8,55]. These similar findings were also reported by aphasic young adults. They spoke of enjoying their participation in community groups, social, art and craft activities, despite having communication difficulties [76]. Other young adults with aphasia reported the benefit of volunteering in building self-confidence and independence [57]. The group composition appeared to influence young adults’ rehabilitation experiences in the community context. They expressed experiencing difficulties in relating to older people with stroke due to the difference in life stage, including lifestyles and interests [72,79]. In one case of a young woman was admitted to a nursing home, she spoke of her feelings of estrangement being surrounded by older adults [18]. The delivery location of community rehabilitation seemed to be an important aspect of young adults’ experiences. They mentioned that the community building used to deliver the rehabilitation service introduced them to other facilities they could access beyond the programme, for example, the gym and the pools on the same site [67]. The ’youthful’ ambience of the rehabilitation centre that was described as supportive as she did not feel like a patient any more [79]. Acute settings. Of the 85 included papers, 29 took place in acute settings, including inpatient and inpatient rehabilitation facilities. Twenty four of these 29 articles reported the experiences of stroke rehabilitation in the acute setting among young adults. These experiences were related to staff-patient relationships, routines and environment, and age appropriate stroke care. Patient-staff relationships. The relationship between young adults with stroke and healthcare professionals has been identified as having a substantial influence on their experience as patients in acute settings [10]. Many young adults spoke of their satisfaction with their inpatient experience and highlighted how the care offered by the healthcare staff made them feel safe, comfortable, and reassured regarding their stroke recovery [52,75,77]. Trust was deemed as crucial before young adults could confide in staff [38]. Loss of independence and control were issues identified by young adults, and related to their inability to perform activities without staff assistance [66,81,102]. Therefore, empathy and emotional support from healthcare staff were highly valued by young adults [8,102]. Judgemental comments about their conditions were reported as negative and upsetting by many young adults [8,32,102]. Several also spoke of their negative experiences associated with the situations where their individual preferences were not taken into account by the healthcare staff [81,82,102]. Young adults’ participation in decision making appeared to be accepted as a positive experience, particularly in discharge planning. In one case, a patient was involved in the decision making and invited to attend the multidisciplinary team meetings [53]. This involvement resulted in an agreement of living in the community after hospital discharge, whereas in the first place, the patient intended to live in his previous flat despite his disability [53]. One young patient reported that home visits a week before discharge were helpful to provide expectations of life at home and what adjustments were needed to their physical environment [71]. Effective communication between patient and staff was crucial in improving young adults’ experiences in acute care. The discussion between staff and young adults about their hopes after stroke may promote optimistic thoughts [40]. The following hopes were identified: return to education, embracing spirituality and staying connected with their support system, such as friends and families [40]. Negative experiences related to a lack of communication between young adults and staff were indicated by a lack of discussion of personal goals [85], no rehabilitation assessment before hospital discharge [66], and not understanding the rehabilitation process [34]. Young adults also reported difficulty in processing information received in hospital during the acute phase of their stroke, particularly in understanding the Latin terminology and jargon used by healthcare professionals [44]. Routines and environment. Many young adults with stroke spoke of their routines and the environment of the inpatient rehabilitation setting. They commonly experienced boredom as a result of few activities during their hospital stay [60,81]. Participating in activities was reported as a way to occupy young adults’ time, such as regular rehabilitation training [66] and attending reading sessions [38]. Rehabilitation training was favoured by young adults and the time after the exercise was considered as ‘boring’ [66,102]. A patient also reported feeling optimistic and hopeful after completing an eight-week physical rehabilitation programme [93]. Several patients highlighted that training intensity and duration should be increased [72,93]. With respect to the environment, staying in a single room could feel isolating: ’a prison cell’ [102]. Nevertheless, sharing a room could lead to lack of privacy and the busy environment was described like ’a train station’ [86]. Several young adults spoke of difficulties sleeping at the hospital due to constant noise and staff carrying out observations [8,107]. Age-appropriate stroke care. The provision of appropriate stroke care in terms of patient age group and conditions was central to young adults’ experiences in the acute setting. Young adults often reported that they were admitted to an inpatient setting with no other patients of the same age group. This led to feelings of ‘no camaraderie’ and not being able to share experiences with other patients, which they felt was important [8,34,109]. Being the only young person in inpatient rehabilitation was reported to trigger feelings of terror, frustration and isolation [32] and depression [39]. Young adults reported that the inpatient facilities were designed for older people instead of young people, particularly in terms of the stroke care goals [8]. Furthermore, they mentioned that the information provided in the hospital was less relevant to young adults, for instance, the use of elderly people’s pictures in the information packs and no information about returning to work, access to income support, driving post stroke and the options for contraception [8]. In contrast, positive feelings were generated from the ability to identify with people with similar conditions. Having a shared understanding with other stroke patients in the care settings was mentioned as psychologically beneficial [8]. Many young adults felt encouraged after listening and speaking to stroke survivors who had gone through situations that they could relate to [8,63]. Community and social care settings. Community and social care settings (beyond inpatient) were reported in 75 out of the 85 articles in this review, with 48 reporting on the rehabilitation experiences of young adults with stroke. These findings are presented under three themes, namely transition from hospital to home, outpatient stroke rehabilitation and community rehabilitation. Transition from hospital to home. The transition of young adults following stroke from inpatient to home care seemed to be a crucial point in their recovery journey. Whilst being discharged home was perceived as a sign of progress towards resuming normality and returning to personal and calm space [46,86], many spoke of the discontinuity of services after their discharge and felt they had ’slipped through the system’ [8]. They felt that they had been forgotten, betrayed and had lost a sense of the safety provided by healthcare staff during their inpatient care [77]. Reported changes included struggles in carrying out activities at home previously assisted by the hospital staff [66] and the physical difference between the home and hospital environment, such as not having a non-slip floor at home [71]. Young adults often made adjustments to achieve their daily living activities and accommodate any limitations resulting from stroke. Reported strategies included prioritising essential activities, completing tasks one by one and choosing relaxing activities above house chores [9,48,97]. Another common approach was finding ways to compensate for physical impairment, such as using a trolley to carry groceries [103] and dedicating more time to complete a task [95]. Other types of adaptation such as writing lists for memory rehabilitation, were also discussed. One young adult described how doing things like writing lists felt like ‘cheating’ but that he was trying to not put pressure on himself [110]. Outpatient stroke rehabilitation. Most young adults following stroke agreed that outpatient rehabilitation helped them to progress their recovery, ranging from occupational therapy, speech and language therapy, functional electrical stimulation (FES), podiatry, to psychological therapy [45,46,65,68,87]. Positive comments were related to increased physical activity levels [47,65,83], improved speech [45], reduced anxiety from practicing relaxation techniques [87] and increased awareness of their own disability and limitation post-stroke [68]. Nevertheless, young adults reported some aspects of the rehabilitation that did not meet their expectations, including a mismatch between their own and healthcare staff’s rehabilitation goal settings or no clear goal setting, a lack of information about realistic timeframes for rehabilitation, or how tiring it could be, a lack of rehabilitation activities beyond mobility function and the short duration of each session [8,70,75]. Young adults described the importance of transparent goal setting in the context to their overall experiences and their feeling of not being in the ‘driver’s seat’, or being understood, showing the need to address the power imbalance between patients and staff [109]. There are a number of medical devices for use in stroke rehabilitation. Young adults using SaeboFlex®; a device for upper limb rehabilitation, described how using the equipment provided them with hope despite the limited evidence on its effectiveness [106]. Other rehabilitation devices such as exoskeletons were also discussed as having limited practical function in particular whether they could be used outside and in public [108]. Occupation seems to be an important part of young adult’s identity in the literature. Looking for jobs following stroke could trigger anxiety [47,68] and not being able to return to work could result in sadness and depression [47,89]. One young adult stated that returning to work was the ’best’ rehabilitation and it provided a sense of returning to normality by going out and interacting with colleagues [90]. However, return-to-work or vocational rehabilitation was reported to be lacking, thus contributing to the psychological and social impact of stroke for young adults [75,105]. Young adults appeared to show determination, motivation and enthusiasm for stroke rehabilitation beyond the hospital setting. These characteristics were evidenced by high attendance rates and continuous engagement of young adults in their rehabilitation programmes [41,59,69]. Many young adults reported that they wanted to challenge themselves and hard work was required to progress [67,84,88]. A young man articulated his motivation to improve his health status and to control stroke risk factors by managing his blood pressure, whereas in the past this was not his concern [101]. Nevertheless, the repetitive nature of rehabilitation training could also lead to exasperation [89]. Many young adults spoke of their experiences of follow-up services related to information provision and content. Several mentioned receiving limited information from healthcare staff about their post-stroke condition, for instance, the physical, emotional and behavioural changes [8], or when their next brain scan would be and which professional should be contacted for advice [79]. A comprehensive list of accessible services and the information about returning to work and accessing welfare, family, or income support were desired among young adults [8,14,34,82]. They also highlighted the importance of receiving practical advice and understandable information from healthcare professionals [8,44]. Young adults appeared to experience challenges in accessing a range of stroke services in social care settings. They experienced extended delays [8,79] or no access at all to particular stroke rehabilitation services, such as psychological and community-based support [8,66]. Other young adults also mentioned having inconsistent meetings with their therapists and difficulties in reaching out to them [79]. A strict schedule of follow-up services was deemed as limiting as young adults had a range of family and work responsibilities that they needed to work around and negotiate with their spouse [79]. The relationship between young people with stroke and healthcare professionals in the context of social care settings appeared to impact on their recovery journey. Healthcare staff who provided reassurance, encouragement and motivation were reported to empower young stroke survivors in achieving higher mobilisation goals in their recovery [52,88]. In contrast, insensitive and discouraging comments from healthcare staff, for instance, stating that the patient would not be able to drive anymore, were reported to be upsetting and diminishing their hope [8]. Several young adults spoke of their plans after completing the rehabilitation programme. The reported short-term plans included returning to work as a volunteer in a day centre and moving to independent accommodation after living with her carers following stroke [67]. A long-term goal described by a young woman was to be able to dance at her children’s wedding [80]. However, cessation of rehabilitation services in the community setting seems to bring tension to young adults with stroke. Young adults expressed their concern about ending their outpatient physiotherapy sessions [52]. After the rehabilitation services were withdrawn, feelings of isolation and abandonment were commonly reported [89,94]. Nonetheless, having shared experiences with people in the community helped fill the gap that was missing from the withdrawn services [89]. Community rehabilitation. Many young adults reported positive benefits of participating in a community group [8,55]. Rehabilitation programmes in community settings allowed young adults to overcome and progress beyond their set self-boundaries [67]. Group interaction with other stroke survivors and learning from their successes were reported to motivate young adults to push themselves beyond their perceived limits [97]. Young adults spoke of psychological benefits of sharing similar experiences with other young people, providing peer support and encouragement, instilling hope and improving self-esteem through the socialising process [8,55]. These similar findings were also reported by aphasic young adults. They spoke of enjoying their participation in community groups, social, art and craft activities, despite having communication difficulties [76]. Other young adults with aphasia reported the benefit of volunteering in building self-confidence and independence [57]. The group composition appeared to influence young adults’ rehabilitation experiences in the community context. They expressed experiencing difficulties in relating to older people with stroke due to the difference in life stage, including lifestyles and interests [72,79]. In one case of a young woman was admitted to a nursing home, she spoke of her feelings of estrangement being surrounded by older adults [18]. The delivery location of community rehabilitation seemed to be an important aspect of young adults’ experiences. They mentioned that the community building used to deliver the rehabilitation service introduced them to other facilities they could access beyond the programme, for example, the gym and the pools on the same site [67]. The ’youthful’ ambience of the rehabilitation centre that was described as supportive as she did not feel like a patient any more [79]. Discussion This review aimed to scope the experiences of young adults relating to stroke rehabilitation across the continuum of care settings. Stroke represents a major disruption to life in all dimensions (bio-psycho-social) and in particular for the young adult will impact on the individual, their family, work, activities, participation in society and lifestyle. Rehabilitation and recovery or partial recovery may take years. Such a life event forces a reappraisal and reprioritisation of life goals. In this review experiences were identified at each transition phase of the young adults’ stroke journey. The journey started with the stroke and diagnosis with admission to an acute facility, followed by transfer to inpatient rehabilitation, discharge from hospital, attending rehabilitation in the community setting, and continuing to adjust to the changes resulting from stroke. We identified three key findings across these data: 1) stroke impacted young adults in both negative and positive ways, 2) the focus and the outcomes of stroke rehabilitation were predominantly physical, and 3) young adults experienced a lack of appropriate stroke rehabilitation in both acute and social care settings. These findings highlight the breadth of young adults’ experiences following stroke and the support required to meet their unmet needs. In our review, we found that young adults experienced enormous physical, financial, social and psychological impacts following stroke. The physical and psychological consequences of stroke in young adults identified in this review are not new and are consistent with previous studies reporting the prevalence of disability, cognitive impairment and depression in stroke survivors across the age groups [112–114]. Physical deficits were perceived as the most problematic and distressing consequences of stroke that tended to lead on to psychological consequences, such as frustration and depression. The disabilities experienced by young adults with stroke were often invisible and misunderstood by others, which further intensified their frustration. With respect to financial and social aspects, the findings were consistent with a prior systematic review that working-age adults experienced financial hardships, difficulties in returning to work and challenges in maintaining relationships with family and friends, and refrained from social activities following stroke [115]. Such financial issues will be dependent on the individual and their circumstances, and the societal, health and welfare frameworks in which they live. Loss of income was a common issue and many were not able to return to work or access support funding, but relied on personal savings and financial support from family [9,35,41,64,75,82,91,95]. Hidden disabilities, such as memory, altered cognition and behavioural changes affected their abiity to return to work or gain alternative employment [82]. Financial hardship also affected their engagement with community rehabilitation opportunities [82]. Whilst the financial hardships and support required were evident in the young adults’ experiences, this area requires further exploration and research. Stroke diagnosis was reported as triggering feelings of fear and grief among young adults. Nevertheless, several young adults spoke of positive changes following their stroke, for example, that they had more time for their spouse and children and for practising their spirituality and developing their own personal strength. These negative and positive experiences suggest that the traumatic event of stroke is internalised individually. Calhoun and Tedeschi [116] refer to positive changes in response to any traumatic event as posttraumatic growth. According to the authors, there are five dimensions of posttraumatic growth, which are personal strength, new possibilities, relating to others, appreciations of life, and spiritual change. All these dimensions were found in young adults with stroke in the included literature and this finding is echoed by other studies of young survivors of natural disasters [117] and cancer [118]. Nonetheless, how these young adults with stroke obtained posttraumatic growth and the role of healthcare professionals in supporting the process remains unexplored. Future research is warranted to better understand the trajectories of posttraumatic growth among young adults following stroke over time. Understanding this could lead to the development of interventions to foster posttraumatic growth in young adults following stroke. Across the identified stroke rehabilitation programmes for young adults, the focus and the expected outcomes were predominantly physical. Nevertheless, some programmes were limited to performing basic daily activities, such as making tea or walking. Young adults wanted higher-level physical goals beyond their ability to perform simple daily activities, for instance, preparing them to return to work. Moreover, there were different contexts or circumstances that influenced how each stroke rehabilitation programme worked (or not) for young adults, which led to different outcomes. Our findings highlight the importance of person-centred goal setting as opposed to a one-size-fits all approach. We strongly suggest that stroke rehabilitation programmes for young adults should be tailored to their personal goals, considering the different needs that young adults have from older people with stroke. Although articles generally aimed to evaluate one outcome (e.g. physical or psychological) for each rehabilitation programme, the programmes often had impact on other aspects beyond their main aim, which was evident across the literature. For instance, Beesley et al. [55] conducted a qualitative study to evaluate the impact on wellbeing of an art therapy programme for stroke survivors. Besides the psychological impact of a feeling of accomplishment and confidence, the participants reported experiencing improvements in their speech and cognitive function [55]. In the studies conducted by Casey et al. [69] and Valkenborghs et al. [93], the focus of rehabilitation was explicitly physical. However, the social interaction from attending such programmes had implications on psychological status and well-being of stroke survivors [69,93]. Completing the rehabilitation programme seems to be empowering for young adults, in particular by improving their future outlook enabling them to reprioritize their goals. These findings show the interconnectedness of physical, psychological and social domains in stroke rehabilitation and reinforces the need to create targeted, responsive, age appropriate rehabilitation. Further research to understand the context and the mechanisms by which stroke rehabilitation programmes succeed, or not, is needed to develop future effective interventions. Marginalisation and invisibility were apparent in the experiences of young adults with stroke in this review, it was further reflected in comments indicating how they felt excluded from stroke rehabilitation and the healthcare system. They reported experiencing stroke-related stigmatisation by society and healthcare staff related to their stroke diagnosis at a young age. They perceived self-stigma about stroke being an older people’s disease, resulting in dismissing the signs of stroke and delays in seeking medical attention. Young adults also mentioned that the stroke rehabilitation programmes were designed for older adults, and they received limited information relevant to their age group, for instance, about employment, family, and income support. It is also important to acknowledge that the healthcare settings and systems in included articles are heterogenous. Therefore, when interpreting young adults’ experiences identified in our findings, these contextual differences of individual countries should be taken into account. The review identified that young adults were only a small proportion of the total participants included in evaluation studies of stroke rehabilitation programmes. There are two plausible explanations for this phenomenon. Firstly, the authors might not focus their evaluation study on younger adults. Secondly, the available programmes related to stroke rehabilitation did not meet young adults’ needs in the inpatient and social care settings, which meant that only a few of them attended the programmes. Such unmet needs were reported by the young adults within the included studies. The lack of age-appropriate stroke care and support, particularly around hidden disabilities affecting psychosocial aspects and employment results in a mix of unmet needs for young adults, which could lead to negative experiences in their stroke recovery journey. These areas need to be investigated at the individual, family, community and societal levels to bring realistic change to the experiences of young people following stroke or brain injury. Limitations It is important to note that included articles in this review were heterogeneous in terms of outcome measures, publication types and levels of reported detail. They were drawn from the literature published in English and whilst this may lead to a degree of bias towards English speaking countries, it is noted that around 98% of the published scientific literature is published in English [119]. Future action on publication policy with regard to language could address this bias and assist authors across the world to raise the profile of their research to give a more global view. The numbers of young adults who were reported or participated in the rehabilitation programmes in each article were often small. Whilst this reflects the lower incidence of stroke amongst this group, these individuals will have many years living with the consequences of the stroke; further research focused on this younger age group is needed to equip them for their futures. This scoping review has addressed the research questions focussing on the impact of stroke, and the rehabilitation experience and outcome for young people following stroke. It has provided descriptions based on the available literature, but cannot be generalised due to the individual nature of the experiences and the variety of contextual issues at personal, community and societal levels. Recommendations The recommendations below summarise the priorities identified above from the literature. These are grouped as Research; Service; and Society. Research. Further research is needed to understand the context and the mechanisms by which stroke rehabilitation programmes succeed, or not, and to develop future effective interventions. Financial hardships and the support required were evident in the young adults’ experiences and need further exploration and research. Understanding trajectories of posttraumatic growth among young adults following stroke over time is needed for the development of interventions to foster this growth. The provision of age appropriate stroke care and support needs to be investigated at the individual, family, community and societal levels. This is particularly important around hidden disabilities affecting psychosocial aspects and employment. There is a need for global and country specific research on the incidence, prevalence and life expectancies of young people with stroke to understand the impact of this condition across the world. Service. The development of age-appropriate stroke services for young people with activities, demands and information relevant to their age group is needed, especially around employment, family, and income support. Stroke rehabilitation programmes for young adults should be tailored to their personal goals, considering the different needs that young adults have from older people with stroke. Society. A greater awareness of stroke affecting young people is needed for both public and professionals to ensure timely recognition and action in the event of a stroke. Public engagement and knowledge exchange activities are required to widen the knowledge and awareness base. Action on publication policy with regard to language which favours English-speaking communities is needed to redress the bias and assist authors across the world to raise the profile of their research for a more globally balanced view. Limitations It is important to note that included articles in this review were heterogeneous in terms of outcome measures, publication types and levels of reported detail. They were drawn from the literature published in English and whilst this may lead to a degree of bias towards English speaking countries, it is noted that around 98% of the published scientific literature is published in English [119]. Future action on publication policy with regard to language could address this bias and assist authors across the world to raise the profile of their research to give a more global view. The numbers of young adults who were reported or participated in the rehabilitation programmes in each article were often small. Whilst this reflects the lower incidence of stroke amongst this group, these individuals will have many years living with the consequences of the stroke; further research focused on this younger age group is needed to equip them for their futures. This scoping review has addressed the research questions focussing on the impact of stroke, and the rehabilitation experience and outcome for young people following stroke. It has provided descriptions based on the available literature, but cannot be generalised due to the individual nature of the experiences and the variety of contextual issues at personal, community and societal levels. Recommendations The recommendations below summarise the priorities identified above from the literature. These are grouped as Research; Service; and Society. Research. Further research is needed to understand the context and the mechanisms by which stroke rehabilitation programmes succeed, or not, and to develop future effective interventions. Financial hardships and the support required were evident in the young adults’ experiences and need further exploration and research. Understanding trajectories of posttraumatic growth among young adults following stroke over time is needed for the development of interventions to foster this growth. The provision of age appropriate stroke care and support needs to be investigated at the individual, family, community and societal levels. This is particularly important around hidden disabilities affecting psychosocial aspects and employment. There is a need for global and country specific research on the incidence, prevalence and life expectancies of young people with stroke to understand the impact of this condition across the world. Service. The development of age-appropriate stroke services for young people with activities, demands and information relevant to their age group is needed, especially around employment, family, and income support. Stroke rehabilitation programmes for young adults should be tailored to their personal goals, considering the different needs that young adults have from older people with stroke. Society. A greater awareness of stroke affecting young people is needed for both public and professionals to ensure timely recognition and action in the event of a stroke. Public engagement and knowledge exchange activities are required to widen the knowledge and awareness base. Action on publication policy with regard to language which favours English-speaking communities is needed to redress the bias and assist authors across the world to raise the profile of their research for a more globally balanced view. Research. Further research is needed to understand the context and the mechanisms by which stroke rehabilitation programmes succeed, or not, and to develop future effective interventions. Financial hardships and the support required were evident in the young adults’ experiences and need further exploration and research. Understanding trajectories of posttraumatic growth among young adults following stroke over time is needed for the development of interventions to foster this growth. The provision of age appropriate stroke care and support needs to be investigated at the individual, family, community and societal levels. This is particularly important around hidden disabilities affecting psychosocial aspects and employment. There is a need for global and country specific research on the incidence, prevalence and life expectancies of young people with stroke to understand the impact of this condition across the world. Service. The development of age-appropriate stroke services for young people with activities, demands and information relevant to their age group is needed, especially around employment, family, and income support. Stroke rehabilitation programmes for young adults should be tailored to their personal goals, considering the different needs that young adults have from older people with stroke. Society. A greater awareness of stroke affecting young people is needed for both public and professionals to ensure timely recognition and action in the event of a stroke. Public engagement and knowledge exchange activities are required to widen the knowledge and awareness base. Action on publication policy with regard to language which favours English-speaking communities is needed to redress the bias and assist authors across the world to raise the profile of their research for a more globally balanced view. Conclusion In this review, we have gathered and summarised the experiences of young adults following stroke from literature over the past 22 years. Our findings provide insights into the negative and positive consequences of stroke on young adults’ lives. The unmet needs of young adults in terms of stroke rehabilitation and care are highlighted. This has emphasised the urgent need to research and develop effective and age-appropriate rehabilitation programmes and interventions that can support young adults following stroke. Supporting information S1 Table. Research questions, operational definitions and search terms. https://doi.org/10.1371/journal.pone.0279523.s001 (PDF) S2 Table. Search strategy. https://doi.org/10.1371/journal.pone.0279523.s002 (PDF) S3 Table. PRISMA-ScR checklist. https://doi.org/10.1371/journal.pone.0279523.s003 (PDF) Acknowledgments We thank Rowena Stewart for her assistance with literature searching and Chest Heart & Stroke Scotland for support in the recruitment of our patient and public involvement (PPI) group. We are grateful for insights from the members of our PPI group that shaped our understanding of young adults’ rehabilitation experiences after stroke. We thank the wider group of YARNS Project partners for their support and contribution to the project.
TI - Young Adults Rehabilitation experiences and Needs following Stroke (YARNS): A scoping review of the rehabilitation care experiences and outcomes of young adults post-stroke
JF - PLoS ONE
DO - 10.1371/journal.pone.0279523
DA - 2025-01-31
UR - https://www.deepdyve.com/lp/public-library-of-science-plos-journal/young-adults-rehabilitation-experiences-and-needs-following-stroke-R9ecFB80bk
SP - e0279523
VL - 20
IS - 1
DP - DeepDyve
ER -