Review Article | Open Access
Scoping Review: The Trajectory of Recovery of Participation Outcomes following Stroke
Participation is a central concept in health and well-being and healthcare, yet operationalizing this concept has been difficult. Its definition, uses in healthcare, and impacts on recovery require ongoing research. Our review question goes like this: from the longitudinal evidence investigating participation among stroke survivors, what are the patterns of participation recovery in stroke survivors over time, and what interventions are used to improve participation? To fully understand these questions, we also ask, how is participation defined in the stroke literature, and what are the measures of participation used in the stroke literature? A systematic scoping review was undertaken using the search terms “stroke,” “longitudinal,” “participation,” and “outcome” in seven databases. Articles included were published until April 2017, written in English, and had at least two longitudinal assessments of participation. Fifty-nine articles met the inclusion criteria. The International Classification of Functioning, Disability and Health was the most frequent definition of participation used (34%). There were 22 different measures of participation. Eight of ten studies demonstrated significant improvements in participation up to 12 months poststroke. Efficacy of interventions and their impact on participation varied. The various definitions, measures, and intervention efficacies of participation highlight the need for further research worldwide into achieving meaningful participation and quality of life among stroke survivors. Future practice should include participation as a main outcome measure.
Stroke is the leading cause of adult disability worldwide . Stroke remains a major global health concern, and its significance is likely to increase in the future due to ongoing demographic changes including the aging of the population and health transitions [2, 3].
Participation is considered a major outcome of successful rehabilitation [4–6] and an essential component of rehabilitation science . Previous findings suggest that participation is a concern for stroke survivors , is considered an unmet need , is influenced by the environment , and may be affected by age, acceptance of stroke, body functions (including upper limb function, depression, and other comorbidities [10, 11]), cognition , skills like walking, and stroke severity .
Stroke is a chronic condition for survivors, with long-term implications such as loss of control over their bodies, valued activities, meaningful skills, and social roles [14, 15] which may disrupt their daily life, relationships, and expectations of the future . These multiple losses may further influence one’s ability to participate in everyday life activities across their lifespan, thus highlighting the importance of investigating participation outcomes among stroke survivors over an extended period of time . While task-specific and learning-based approaches to rehabilitation have the strongest evidence base , evidence regarding participation after stroke and intervention programs for enhancing participation in the long term is lacking . Moreover, rehabilitation studies do not often include participation outcomes , and studies that do refer to participation do not often use a conceptual framework nor a clear definition of participation. This lack of consensus surrounding the conceptualization of participation has led to difficulties operationalizing participation [20–23]. These difficulties may result from the diverse definitions and interpretations of participation as a concept and from the wide variety of tools purporting to measure participation , making participation evaluation variable, challenging, and difficult to interpret.
In summary, participation is a central concept in healthcare and in disciplines such as occupational therapy . Yet its definition and inclusion in health outcomes and its impacts on recovery over time are relatively limited to date and require ongoing research . The rising prevalence of stroke and its significant consequences, in particular, the fact that participation is a significant factor that affects people’s functioning , emphasize that it is essential to better understand the recovery of participation as an outcome and how participation may be a targeted outcome in interventions for stroke survivors. This directed investigation may contribute to the conceptualization of participation and its application in health theory and practice .
1.1. Objective of the Scoping Review
To the best of our knowledge, a scoping review of the literature investigating the recovery of participation outcomes after stroke has not been conducted. The aim of this scoping review was to critically review the evidence investigating recovery of participation outcomes following stroke. The main questions guiding our review evaluation and evidence synthesis of the longitudinal studies investigating participation after stroke: (i) what are the patterns of recovery in participation outcomes in stroke survivors over time and (ii) what interventions are used to improve participation? To fully understand these questions, we also ask, how is participation defined, and what are the measures of participation used in the stroke literature?
2. Materials and Methods
This scoping review was based on the methods outlined by Arksey and O’Malley , which include six iterative steps: (1) identifying the research question; (2) searching for relevant studies; (3) selecting the studies; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting with stakeholders to inform or validate findings. A scoping review methodology was selected because it can include broad questions and a range of research approaches surrounding a topic of interest. This methodology assists to identify the gaps in the current knowledge base to help guide future research in the field. Step 6, consultation with stakeholders is optional. We did not directly consult stroke stakeholders. However, ongoing consultation by the authors as the key stakeholders occurred throughout the review process.
The research question and the search terms were developed in consultation amongst the authors. The search terms were related to the study population, the intervention, the comparison or outcome, and the types of study design to include in the review. Seven databases were searched: EMBASE, PubMed, Web of Science, CINAHL, CINAHL Plus, Medline, and PsycINFO using the search terms “stroke,” “longitudinal,” “participation,” and “outcome.” Synonyms, wildcards, and Boolean operators were used in the search strategy (Table 1). Study designs included were longitudinal cohort, case control, pre-post test, and case series and case report studies with or without intervention. Included studies were written in English, published up to April 2017, and had at least two participation evaluation time points in the same sample, and with the same participation instrument, as defined by the authors of the study under review. Studies investigating paediatric stroke and severe comorbidities such as Alzheimer’s, diabetes, and cancer were excluded.
2.1. Data Extraction
Three reviewers worked together to evaluate all articles for this review using Covidence online systematic review platform . Each article was independently reviewed following a systematic process according to the inclusion and exclusion criteria. Any disagreements between reviewers were resolved by consensus.
The flow of studies through the process is shown in Figure 1. The final number of studies included in this scoping review was 59. The summary of data extracted from each of the articles is provided in Table 2. Most of the studies included an assessment of participation in a community setting (85%); four of the 59 studies (7%) included assessments of participation only in an inpatient setting; and three studies did not state the setting location. Sixteen studies did not describe the assessor; of the remaining studies, the majority (81%) of assessors were physiotherapists and occupational therapists. When grouped into continents, the majority of the studies were based in North America (47%), followed by Europe (32%), Australasia (15%), Africa (3%), mixed countries (3%), and South America (2%). Interestingly, the earliest study in our scoping review was in 2001.
Note: ADL: activity of daily living; ALA: assessment for living with aphasia; DCP: disability creation process; FAI: Frenchay activity index; GAS: goal attainment scale; GPS: global positioning system; ICF: International Classification of Functioning, Disability and Health; IMPACT-P: participation subsection of the ICF measure of participation and activities; IPA: impact on participation and autonomy; LHS: London handicap scale; LIFE-H: assessment of life habits; MAL: motor activity log; MPAI-4: Mayo-Portland adaptability inventory; mRS: modified ranking scale; NEADL: Nottingham extended activities of daily living; NLQ: Nottingham leisure questionnaire; OGQ: occupational gaps questionnaire; PASIPD: physical activity scale for individuals with physical disabilities; RAND-36: physical function index of the medical outcomes study RND-36 item health survey; RCT: randomized control trial; RNL: reintegration of normal living; RTP: repetitive task practice; SF-36: short form 36; SIS-P: stroke impact scale participation domain; USER-P: Utrecht scale for evaluation of rehabilitation-participation; VR: virtual reality. Cohort studies that statistically tested for changes in participation.
3.1. Patterns of Participation Recovery after Stroke
Of the 59 studies, all included two time points, 38 had a third measurement time of participation, 18 had a fourth, and 18 had a fifth measurement time. The terminology used to describe when participation was measured varied across the studies. Thirty-four of the studies (58%) called the first measure a baseline measure; the remaining studies described the measure in terms of a time point poststroke (37%) or postintervention/discharge (5%). The most frequent measurements of participation poststroke were 6 months, then 3 months, and then 12 months (see Table 3 for details).
Following an intervention (35 of the 59 studies), the most frequent time to measure participation was immediately after the intervention (32%). The interventions ranged in duration (e.g., 30 hours of therapy to 4 months of therapy). The next most frequent time point to measure participation following an intervention was 6 months, followed by 3 months postintervention. Four studies measured participation following a period after discharge from a hospital/rehabilitation unit or physiotherapy. One study did not specify whether the 12-month follow-up was 12 months after baseline, intervention, or poststroke.
Although all 59 studies reported at least two measurement times of participation after stroke, only 10 studies statistically tested for change during the natural recovery of participation over time. Of these 10 studies, 8 demonstrated a significant improvement in participation over time. These eight studies included the following time points: stroke to 3 months; stroke to 6 months; 2-3 months to 6 months; and 6 months to 12 months. The two studies that did not find a significant change included one study that tested participation at a mean time poststroke of 6 years poststroke and then measured participation again 3 months later following intervention. The other study did not show a significant improvement from 3 months to 6 months poststroke.
3.2. Intervention Efficacy and Impact on Participation
There were 17 randomized control trials included in this review, as detailed in Table 4. Of the 12 studies, 8 demonstrated a significant association with participation. Three of these studies used a form of supervised exercise program, compared to usual care, to improve participation, and measured using the Participation domain of the Stroke Impact Scale (SIS-P). One study demonstrated the use of a leisure therapy program on improved participation, measured in minutes engaged in leisure activities and the number of leisure activities compared to controls. One study showed that the use of therapist-supervised repetitive task practice (RTP) had a greater effect on participation than RTP combined with robotic-assisted therapy at 2 months follow-up. Three studies found that participation improved over time regardless of the intervention (cognitive behavioral therapy versus computerized cognitive training, aerobic exercise versus no therapy, and patient education program versus placebo group).
Note. ADL: activity of daily living; CBT: client-centred therapy; CBT: cognitive behavioral therapy; ICF: International Classification of Functioning, Disability and Health; RTP: repetitive task practice.
The four studies that did not demonstrate a significant relationship with participation included three interventions focusing on the use of specific physical therapy interventions (foot drop stimulator versus standard ankle foot orthosis, body weight–supported exercise compared to overground walking training, and community-based fitness and mobility exercise protocol versus usual care) and one intervention focusing on a client-centred activities of daily living (ADL) program versus usual care.
3.3. Measuring Participation
There were 22 different measures of participation used in the included studies. The SIS-P was the tool used by 24 of 59 studies (46%) included in this review, as detailed in Table 5. Of the 24 studies that used the SIS-P, 9 used the ICF definition of participation, 13 used an operational definition, four used “meaningful activities/occupations,” two used “community participation,” and one used the term “social participation.” The next most frequent measure of participation was the LIFE-H. All studies using the LIFE-H () used the Disability Creation Process conceptual framework definition. Four studies used the London Handicap Scale; of these, three used the International Classification of Functioning, Disability and Health (ICF) definition of participation, and the other used an operational definition. Three studies used the Utrecht Scale for Evaluation of Rehabilitation-Participation; of these, all used an operational definition of participation. Three studies used the Short Form Health Survey (SF-36); of these, two used the operational definition, and the other used the term “role participation.”
Note. ALA: assessment for living with aphasia; FAI: Frenchay activity index; GAS: goal attainment scale; GPS: global positioning system; IMPACT-P: participation subsection of the ICF measure of participation and activities; IPA: impact on participation and autonomy; LHS: London handicap scale; LIFE-H: assessment of life habits; MAL: motor activity log; MPAI-4: Mayo-Portland adaptability inventory; mRS: modified ranking scale; NEADL: Nottingham extended activities of daily living; NLQ: Nottingham leisure questionnaire; OGQ: occupational gaps questionnaire; PASIPD: physical activity scale for individuals with physical disabilities; RAND-36: physical function index of the medical outcomes study RND-36 item health survey; RNL: reintegration of normal living; SF-36: short form 36; SIS-P: stroke impact scale participation domain; USER-P: Utrecht scale for evaluation of rehabilitation-participation.
3.4. Definitions of Participation
Of the 59 studies included in this review, many did not provide a definition of participation (41%), instead only describing the tool used in the study as measuring participation (e.g., “participation was measured using the Stroke Impact Scale”). This was categorized as an operational definition. Of the remaining studies, the most frequent definition of participation was the ICF definition (34%), “i.e. involvement in a life situation.” The remaining definitions used by two or fewer studies are reported in Table 6.
Note. ICF: International Classification of Functioning, Disability and Health; LIFE-H: assessment of life habits.
When we compared the definition of participation used in the study as a proportion of the studies from each of the continents, we found that operational definitions and the ICF definition were widely used across all continents (see Table 7).
Note. ICF: International Classification of Functioning, Disability and Health; LIFE-H: assessment of life habits.
This scoping review aimed to critically review the evidence regarding patterns of recovery of participation outcomes among stroke survivors and to summarize the patterns of recovery and intervention efficacy on participation outcomes over time. The earliest publication included in this scoping review was in 2001, when the World Health Organization (WHO) endorsed the ICF, of which participation is a core component, suggesting that the use of the term “participation” is related to the release of the ICF by the WHO. The impact of the ICF on participation may also be reflected by the origin of the included publications. Our scoping review revealed that the majority of the studies were conducted in North America—the origin of conceptual frameworks including participation such as the Person-Environment-Occupation-Performance (PEOP) and ICF . Interestingly, this scoping review also included studies performed in many other counties and continents (e.g., Europe, Australasia, Africa, and South America), supporting the perception that participation is a major outcome measure of intervention and recovery and is accepted worldwide.
4.1. Patterns of Participation Recovery Outcomes over Time
The findings from this scoping review revealed that participation is most often measured 6 months poststroke, followed by 3 months poststroke, and 12 months poststroke. These findings may lead us to suggest that participation recovery occurs at these time points. However, this may not be the true trajectory of recovery of participation. Rather, we are limited by the measurement tools and time points under which they occurred. Nonetheless, previous studies have suggested that, among stroke survivors, progressive and significant functional recovery in participation outcomes may occur during the first 6 months . The findings from our scoping review extends this knowledge, highlighting that improvements in participation does occur over time and up to 12 months poststroke. However, the percentage of the studies that performed these longer follow-ups to 12 months is low. There were even fewer studies conducting follow-up beyond 12 months. This may be due to the difficulties of a cohort study, such as the financial cost of conducting long-term studies, participant drop-outs, difficulties following up participants in rural and remote settings, and educational background of the population (the ability to read and write) .
4.2. Intervention Efficacy on Participation and Recovery
Findings of intervention efficacy and impact on participation were not consistent in the studies included in this scoping review—only some studies found improvement in participation resulting from posttreatment recovery. Some reported improvement in participation due to spontaneous recovery. Other studies did not find a relationship between intervention and participation.
The studies that found improvement in participation used varying intervention strategies, such as supervised exercise programs, leisure therapy programs, and repetitive task practice. The studies that did not find a relationship between intervention and participation applied specific techniques such as cognitive behavior therapy or focused on improving specific body functions, mainly motor functions (using, for example, foot drop stimulator, body weight support, or walking training). These results raise questions regarding the literature claiming that intervention should aim to improve one daily activity, such as walking, to enhance participation. As previous research has stressed , improvements in participation levels of patients with stroke require particular attention to situations demanding community, social, and civic involvement. Further, in this scoping review, several of the outcomes on participation referred to mobility, fitness, and other aspects of physical/motor function. It may be assumed that because these studies were performed by physiotherapists, special attention was given to this area. This supports Kjellberg et al. , who stated that participation in the physical field is highly represented in the literature of stroke survivors. To fully utilize and apply these findings in health theory and practice, they should be interpreted in relation to how the measurement of participation was conceptualized and measured by the studies in this scoping review.
4.3. Measuring Participation
This scoping review found various measures of participation that were used across studies. The most prevalent measures found in this scoping review were the SIS-P, followed by the LIFE-H. Previous studies investigating these tools and other tools purporting to measure participation have highlighted that the different tools measure different domains of participation (e.g., Community, Social and Civic Life, Domestic Life, and Activities of Daily Living) and different aspects of participation (i.e., frequency, restrictions, satisfaction); the administration and response formats are different (e.g., self-report, interviewer-administered), and the psychometric properties varied [24, 32–34]. For example, in the study by Tse et al. , the Participation domain of the SIS covered four of the nine Activities and Participation domains of the ICF, whereas the LIFE-H covered seven of the nine domains. Further, each tool covered each domain of the ICF to varying degrees: the SIS-P contained three items in the Community, Social and Civic Life domain of the ICF, whereas the LIFE-H contained nine. These differences in how participation is measured impacts on our future understanding and conceptualization of participation. For example, Kossi et al. , who measured participation using the Participation Measurement Scale (PM-Scale) that covers all nine ICF domains, found that some participation domains are affected by stroke more than others: participation in community, social, and civic life; interpersonal interactions and relationships; and domestic life . Similarly, Heinemann et al.  stressed that greater restrictions in participation among stroke survivors are related to community, social, and civic life.
Further, it has been shown that the different aspects of participation are only partially correlated . Blomer et al.  compared the association between participation frequency, participation restriction, and participation satisfaction using the Utrecht Scale for Evaluation of Rehabilitation-Participation. They found that the strongest independent association was between participation restriction and participation frequency in vocational activities. Participation frequency in leisure and social activities was not independently associated with participation restriction, nor was participation frequency in leisure and social activities associated with participation satisfaction. This finding suggests the need for measures of participation to cover the varying aspects of participation in discrete scores and not measures that combine aspects of participation into one overall score. We suggest that, because the SIS-P covers a brief range of domains in Activities and Participation section of the ICF and it combines different aspects of participation into one score, it is best described as a screening tool of participation.
4.4. Definitions of Participation
Since the publication of the ICF in 2001, the concept of participation has become central in discussions across rehabilitation science . Yet this scoping review found that many publications did not provide a definition of participation but rather described the tool used in the study to measure participation (such as the SIS). The studies that used a definition of participation used varying definitions, such as role participation, community participation, social participation, participation as reflected in meaningful activities/occupations, or life habits. Nevertheless, the most frequently used definition was that of the ICF, which emphasizes that health is broader than a purely medical or biological conceptualization of dysfunction and must consider the influence of the environment and other contextual factors on functioning. Participation is defined by the ICF as an individual’s involvement in life situations . It represents the societal perspective of functioning. According to the ICF, functioning is the interaction of individuals with their physical, social, and environment. More concretely, emphasis is on the individual’s ability to perform activities and to participate in real-life, everyday situations . Indeed, since the publication of the ICF in 2001, the concept of participation has become central in discussions across rehabilitation science and practice.
Although the ICF conceptualization of participation is widely used, there are other conceptualizations of participation used within the health rehabilitation literature. The Person-Environment-Occupation-Performance (PEOP) is a model stemming from occupational therapy . In the PEOP model, participation is defined as active engagement in daily life, families, work, and communities. In this model, occupational performance and participation are a result of the interaction between factors related to the person, the environment, and one’s chosen activity or occupation. According to the PEOP model, occupational performance reflects the doing, and participation reflects the active engagement in life. The conceptual framework on participation by Hammel and colleagues’ emphasizes the importance of participation choice, control, and engagement .
Using conceptual frameworks such as the ICF and the PEOP assist to develop theory and provide the rationale and guide the application of theory into practice . The studies in this review conducted in Africa used only the ICF definition of participation, while those originating from other countries out of Africa (as seen in Table 7) used a variety of definitions of participation. Indeed, participation, specifically meaningful participation in everyday occupations, is a complex phenomenon to conceptualize and measure . The reason for choosing one definition over another requires further study—is it because conceptual frameworks such as the ICF and the PEOP are not applied in specific geographic areas? Does it result from cultural reasons, from practical reasons such as the setting, or is it linked with existing evaluations of participation that cover definitions such as that of the ICF? Is it easier/more practical to measure participation in that specific definition? Are there financial reasons? Answers to these questions may help in establishing future studies and in turn better outcomes for stroke survivors.
Another finding is that the number of publications per year has not increased linearly. Considering that participation is an important outcome measure of intervention, it would be expected that the number of publications should rise. Research and practice should elucidate factors that may lead to an increase in participation outcomes: for example, what may enhance the conduct of studies investigating participation in stroke survivors and longitudinal studies relating to intervention efficacy on participation? This information may contribute to evidence-based practice for the benefit of stroke survivors expressed in better engagement in real-life settings, meaningful participation, and better quality of life.
To summarize, participation is a critical factor that should be considered in intervention programs for stroke survivors. The various definitions of participation, the assessments, and the limited information about intervention efficacy in meanings of participation highlight that further studies should be performed worldwide and contribute to a coherent and consistent discussion targeted at achieving meaningful participation among stroke survivors.
Considering the challenges that stroke survivors face and that participation is a critical outcome measure of intervention, evaluations of participation should reflect meaningful participation—the subjective experience of the individual’s performance of activities , the enjoyment from participating in the activity [42–44], the context where the participation takes place, and also the activities desired by the individual.
4.5. Implications for Stroke Rehabilitation
Participation as a main outcome measure of intervention should continue to receive special attention in rehabilitation programs for stroke survivors. For example, occupational therapy intervention programs for participation should include clinical reasoning, in which therapists profile the individual’s challenges, map problem priorities, and, together with the individual, set meaningful goals to enhance participation in real-life context to achieve the optimal rehabilitation experience. As such, therapists should combine self-reports with observations, use an elaborated point of view to understand factors that influence participation (including personal and environmental factors), and use conceptual models such as the PEOP alongside theoretical frameworks such as the ICF to accurately understand these complicated relationships  and focus interventions accordingly. Therapists must also consider the measurement tool used to assess participation. Different tools assess different domains and aspects of participation . Consistent use of the most appropriate participation measure will assist to meet stroke survivor’s specific participation needs.
4.6. Implications for Research
In general, further studies are needed in order to (1) profile participation among stroke survivors as an outcome measure of recovery and/or intervention and (2) expand the body of knowledge about study designs, sensitive assessments, and time points of evaluations that may provide data about occupation-based interventions and their effectiveness in terms of participation and well-being.
More studies should be performed by disciplines where participation is the focus, such as occupational therapy, and we must extend beyond the emphasis found today on motor function and mobility; provide more data about the interaction between body function, performance, and participation; illuminate the interaction between personal and environmental factors; and consider contextual factors such as sociocultural background to find optimal strategies that meet patients’ specific needs and interests.
4.6.1. Strengths and Limitations
Strengths of this review include using recommended and rigorous methods widely accepted in the conduct of scoping reviews and using broad search terms across a range of databases in order to maximize the likelihood of capturing the available research in the recovery of participation outcomes following a stroke. Limitations of this scoping review result from the variability in studies’ designs and methods, their definitions of participation, the relatively small number of studies that examine intervention impacts on participation in stroke survivors, and the multiple assessments, assessors, and interventions, which make it difficult to profile the effects of specific intervention tools and strategies on participation. Many studies focused on symptom management and on activities of daily living. Participation evaluation mainly referred to type of activities and did not use an elaborated perspective about where and with whom does the individual participate and how much they enjoy engaging in the activity. Further studies focussing on participation outcomes may contribute to filling this gap in research.
Stroke rehabilitation research and practice regarding stroke survivors should refer to participation as a major outcome measure of recovery and intervention effectiveness. Assessments should be used that include a broad perspective on participation domains. However, tools measuring participation must not combine the different aspects of participation into one overall score. This will assist us to better understand which interventions have a better impact on participation and recovery.
Further research should be performed to support occupation-based intervention effectiveness for providing stroke survivors optimal intervention, meaningful participation, and meaningful life.
Conflicts of Interest
The authors declare that there is no conflict of interest regarding the publication of this paper.
Batya Engel-Yeger and Tamara Tse are joint first authors. Batya Engel-Yeger, Tamara Tse, and Leeanne M. Carey codesigned the study. Batya Engel-Yeger and Tamara Tse collected the data, analysed the data, interpreted the findings, and cowrote the paper. Naomi Josman, Carolyn Baum, and Leeanne M. Carey contributed to the interpretation of the results and review of the manuscript.
This scoping review was supported by the James S. McDonnell Foundation 21st Century Science Initiative in Cognitive Rehabilitation-Collaborative Award (# 220020413) and the Neurorehabilitation Science Collaborative, a consortium of rehabilitation scientists and neuroscientists formed with the mission to use our collective knowledge and diverse science perspectives to advance the science of neurorehabilitation.
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