http://orcid.org/0000-0002-6938-5282
Abstract
Background: Being engaged in activities in places outside the home after a stroke can be challenging. Knowledge about what characterize places outside the home is important to support participation.
Objectives: To explore patterns of participation in places for activities outside the home after stroke and whether these patterns were associated with personal and environmental aspects.
Material and methods: Sixty-three people with stroke were interviewed using the Participation in Activities and Places Outside Home (ACT-OUT) questionnaire. A two-step cluster analysis was used to identify patterns of participation and non-parametric test was used to explore potential associations to the patterns of participation.
Results: Four clusters of patterns of participation, based on frequency, familiarity of the place/the way to the place and perceived distance, were identified. The patterns were significantly associated with type of place, activity domain, retained or abandoned participation, transportation and being accompanied by someone. The severity of disability was significantly associated with groups of individuals with different patterns of participation.
Conclusions: Different combinations of aspects facilitated and hindered whether or not participation changed. To support people with stroke in their endeavour to retain or recapture participation, social support is important to consider in relation to transportation, activities and places outside the home.
Introduction
Participation commonly include engagement in activities in numerous places. After a stroke, it can be challenging to be engaged in activities in places outside the home [Citation1–4]. Recent research has found that people with a severe or moderate disability after a stroke visit fewer places, compared to those with good recovery after stroke [Citation5]. Differences between these groups in the types of places visited are mostly related to social, cultural and spiritual activities, as well as places for recreational and physical activities. These types of places can be considered as challenging, as they are often characterized by many stimuli, for example, crowds and sounds. In addition, many activities performed in these places can be perceived as more physically and cognitively demanding [Citation1] and include more unpredictable social interactions than activities carried out at home [Citation6–9]. To enhance participation after stroke, the interdependency between places and activities reflected above implies the importance of not only a focus on the activities but also on the places. However, aspects related to whether or not people after a stroke continue to visit places has received limited attention. Therefore, more knowledge about the aspects related to places that facilitate and hinder participation after stroke is needed.
It is well known that the possibilities for participation are influenced by transportation to and from different places where the activities take place [Citation3,Citation10,Citation11]. When the place of residence is located in areas where access to public transportation is limited, a car is particularly important for transportation. However, a common consequence for people with stroke is that the person loses their driver’s license [Citation12,Citation13], which means that other forms of transportation [Citation14,Citation15] or support from others for transportations is needed [Citation16]. The use of public transportation can also be challenging for people with stroke [Citation8,Citation9,Citation14,Citation17]. Access to a social network that facilitates common activities and provides support to engage in those activities when needed also influences participation [Citation17,Citation18]. Consequently, place of residence, transportation and being accompanied by someone are important for activities outside home. However, knowledge about other aspects that are related to places outside the home and how these associate with whether participation is retained or abandoned is scarce. Research studies have indicated that the perceived distance to the place, the familiarity of the place and the familiarity of the way to the place influence participation and encourage more extensive studies [Citation17]. We also lack knowledge about the activity domains for the places as well as the types of places that people with stroke retain or abandon, that is, if certain domains or types of places are more influenced of changes. Consequently, more knowledge about how such aspects relate to whether or not people continue to visit places after a stroke is important.
By improving the knowledge about facilitators and hindrances that characterize places for activities outside the home chosen as important by people with stroke, it is possible to more comprehensively understand the situations in which they experience challenges for their participation. Furthermore, we need to know how different aspects group together to either facilitate or hinder participation in places for activities outside the home, that is, patterns of participation. Additionally, knowledge is needed about how aspects that are more bound to either personal or environmental aspects (e.g. the severity of the disability, place of residence and transportation) influence patterns of participation. This knowledge about the aspects that characterize patterns of retained or abandoned participation and associated factors is important to improve the design of rehabilitation interventions for people with stroke. Through that more detailed knowledge, professionals can be better prepared to support people to continue or recapture activities in places outside the home that are meaningful, which is an urgent issue in rehabilitation to promote participation after stroke [Citation15]. This knowledge can also contribute to policies and decisions regarding universal design of environments on a societal level. Therefore, the aim of this study was to explore patterns of participation in places for activities outside the home after stroke and whether these patterns were associated with whether the place was retained and abandoned, transportation, being accompanied by someone and type of place and activity domain. Moreover, associations between groups of individuals with different patterns of participation and the severity of the disability, being a driver or not, place of residence were explored.
Methods
Design and participants
This study was a cross-sectional exploratory study. The sample was selected from two databases of clients who were admitted to stroke rehabilitation between 2010 and 2015 in a hospital in northern Sweden. The inclusion criteria were: (i) being diagnosed with stroke within the past 1–4 years (ii) being in the age of 18–64 years, and (iii) living in one of five municipalities located near the hospital. No exclusion criteria were applied in the study. Of the clients in the databases, 166 fulfilled the criteria for inclusion, and of these, 63 agreed to participate, while 72 declined participation and 31 could not be reached by mail or phone. A comparison between the participants (n = 63) and the non-participants (n = 103) showed no significant differences in terms of sex (Chi-squared test, p = 0.348), age (t-test, p = 0.770), or time since injury (t-test p = 0.621).
Instrument
To evaluate perceived participation, the Swedish version of the Participation in Activities and Places Outside Home (ACT-OUT) questionnaire was used. The ACT-OUT [Citation19] consists of three parts and a manual. Part I originally contains questions related to 24 places outside the home. Because ACT-OUT was primarily developed for older adults, three places were added to the instrument to cover places relevant to people of a working age. The 27 places are grouped into four activity domains: (a) consumer, administrative and self-care places, for example, mall/supermarket/big store (eight places), including two added places: employment agency/job centre/health insurance office and preschool/school/youth leisure (b) places for medical care, for example, hospital/healthcare centre, day care (five places); (c) social, cultural and spiritual places, for example, restaurant, entertainment/cultural places (seven places), and one added place: sports stadium; (d) places for recreational and physical activities, for example, summerhouse, sport facility (seven places). For each of the 27 places, three questions are asked: did you visit the place before the stroke, do you currently visit the place, and do you want to visit the place in the future? Part II aims to gather in-depth information about places where no change has occurred (i.e. places the person retain participation in/continues to visit after the stroke) and places were a change has occurred (i.e. places that the person abandon participation in/no longer visit after the stroke). For each of the four activity domains, the participant prioritizes, that is, chooses one place where no change has occurred, and one place were a change has occurred. This means that each person can prioritize a maximum of eight places, but when no change has occurred in a domain, no place can be chosen. Part II contains two sections with questions about (i) places and activities and (ii) how to get to and from the places. The first section (i) includes questions about how frequently a place is visited and how well known the place is. The second section (ii) consists of questions about transportation to and from the place, whether somebody follows to the place, the perceived distance to the place and how well know the way to the place is. Part III includes general questions about life satisfaction, risk-taking and stress factors but was not used in this study. Part I of the instrument was used to identify the places the participants’ visited in each of the activity domains where (1) participation was retained after the stroke (visited before and currently) and (2) participation was abandoned (visited before the stroke but not currently). Consequently, the places the person started to visit after the stroke were not included in the analysis (not visited before the stroke but currently). Part II was used in this study to gather more information about the specific places the participants chose to talk about in each activity domain (one retained and one abandoned place from each activity domain, maximum 8 places). These questions and how they were operationalized are shown in .
Table 1. ACT-OUT: Description of how the ACT-OUT questions were operationalized in the analysis.
The severity of disability after stroke was measured using the standardized interview-based Glasgow Outcome Scale Extended (GOSE) instrument and categorized into three levels: severe disability, moderate disability and good recovery [Citation20,Citation21]. The GOSE has satisfactory psychometric properties regarding scale validity [Citation21] and inter-rater reliability validity for use in people with brain injuries [Citation20].
Procedure
At recruitment, the participants received verbal and written information about the study and its purpose, confidentiality and their right to withdraw at any time. Each participant gave their written consent. Data collection was performed for 55 participants on one occasion and for the remaining participants (n = 8) on two occasions, depending on each participant´s condition. Most of the participants (n = 48) preferred to be interviewed in their homes, while the remaining chose other places. Two registered occupational therapists carried out the data collection, both experienced in research interviewing people with stroke. The data collection session began with questions related to sociodemographic data and thereafter the ACT-OUT and GOSE were used. The Ethics Research Committee of Umeå University in Sweden approved this study before it started (Dnr 2016-169-32).
Data analysis
The first step in the analysis was to describe the characteristics of the participants and the self- chosen places with retained and abandoned participation. Thereafter, two-step cluster analysis [Citation22] was used to identify clusters, that is, patterns of participation in places for activities outside the home using Schwartz's Bayesian Information Criterion (BIC) to inform the decision on the number of clusters that best represents the underlying structure of the data. The method groups together places based upon similarity across the set of aspects defined below. The analysis is exploratory and hypothesis generating [Citation23]. The aspects used were four variables from Part II of the ACT-OUT describing the places; frequency, familiarity of the place, perceived distance and familiarity of the way to the place (). Finally, potential associations between the identified clusters, that is, patterns of participation in places for activities outside the home, and whether the place was retained and abandoned, severity of the disability, being a driver or not, place of residence, transportation, being accompanied by someone and type of place and activity domain were explored. Moreover, we examined each participant's belonging to the clusters in order to be able to explore associations between groups of individuals with different patterns of participation and the severity of the disability, being a driver or not, place of residence. The associations were explored using descriptive statistics and Chi-squared tests. In all statistical analyses, the level of significance was set at p < 0.05.
Table 2. Characteristics of the participants (n = 63) in terms of sociodemographic data and driving.
Results
The characteristics of the sample () show that a majority of the participants had a severe or moderate disability, cohabitated and lived in a private house located in city centre/suburb area. Almost as many women as men were included.
Self-chosen places with retained and abandoned participation
In total, 374 places were chosen by the 63 participants; a mean of six places per participant. Of all the places, 244 were selected to describe retained participation, and 130 places were selected to describe abandoned participation. The most common self-chosen places in which the participants perceived retained participation (visited) in each activity domain were the following (): (a) small grocery store and mall/supermarket/big store; (b) hospital and dentist; (c) entertainment/cultural places, friend/family member’s place and restaurant; (d) forest/mountain/lake/seaside, neighbourhood and cottage/summerhouse. The most common self-chosen places in which the participants perceived abandoned participation in (did not visit) after the stroke were in activity domains: (a) employment agency/health insurance office and preschool/school; (b) therapy and day care; (c) senior centre/social club and sport stadium; (d) sport facility and forest/mountain/lake/seaside.
Table 3. Description of self-chosen places outside the home with retained participation, that is, places people continued to visit after the stroke (no change), and places with abandoned participation, that is, places people no longer visited after the stroke (change) (n = 63)*.
Patterns of participation in places for activities outside the home
The analysis generated four clusters including the four variables: frequency, familiarity of the place, perceived distance, and familiarity of the way to the place, (45.5% of the places were frequently visited, 90% of the places were familiar, 72.5% of the places were closely located and 98% had a familiar way to the place). It was shown how the different aspects (variables) group together to form four patterns of participation in places for activities outside the home (). The four patterns of participation each include places from all activity domains and are numbered based on the size of the cluster.
Table 4. Clusters of patterns of participation in places for activities outside the home and the aspects connected to the place that characterize the clusters (activity domain, most common places, retained or abandoned place, accompanied by someone and transportation).
The places in cluster 1 (n = 137 (36.6%) of the places) were familiar, had a familiar way to the place, were located close to the home and were visited frequently (daily–weekly) .The places in cluster 2 (n = 121 (32.4%) of the places) were familiar, had a familiar way to the place, were located close to the home and were visited less frequently (monthly–yearly). The places in cluster 3 (n = 76 (20.3%) of the places) were familiar, had a familiar way to the place, were located far from the home and were visited less frequently. The places in cluster 4 (n = 40 (10.7%) of the places) were less familiar, mainly had a familiar way to the place, were mostly located far from the home and were visited less frequently.
Association of the patterns of participation in places for activities outside the home (the four clusters) with activity domain, places in each domain, transportation and accompany with someone
Even if places from all activity domains were represented in each cluster, certain activity domains were significantly in majority in the clusters (Activity domain D in cluster one and activity domain B in clusters two and four). Of the five most commonly chosen places (reported by at least 20 participants); small grocery store, supermarket/mall, hospital therapy and sports facility, three significantly differed between the clusters (). Small grocery store and sports facility were significantly most common in cluster one and hospital in cluster two.
The four patterns of participation were significantly associated with being retained or abandoned (p < 0.001), mode of transportation (p < 0.01) and whether the participant were accompanied by someone or not (p < 0.05) (). Cluster two had the greatest proportion of the retained places and cluster four had the greatest proportion of the abandoned places. A majority of all the places in all the patterns of participation were accessed by car, and the percentage of transportation by car was especially high in the patterns of participation which included places located far from home that were visited less frequently (clusters three and four). The need of being accompanied by someone was reported to a highest extent in cluster two including places located close to the home and visited less frequently.
Association of the patterns of participation in places for activities outside the home with severity of disability, place of residence and being a driver or not
As many participants visited places which demonstrated profiles that belonged to several clusters, an analysis of the distribution of participants across clusters was performed. Initially, participants with places that only or to a majority were represented in cluster 1 (with places that were familiar, had a familiar way to the place, were located close to the home and were visited frequently) were identified, Group 1, n = 20 (32%). Participants with places that were less familiar and either/or had a less familiar way to the place, were located far from the home or were visited less frequently or participants with places placed in a large variation of clusters were then combined, Group 2, n = 43 (68%). This resulted in two groups of participants visiting places with different patterns of participation. The groups were compared regarding level of disability after stroke, place of residence and being a driver or not () and only level of disability significantly differed between the groups (p < 0.05). In Group 1, 75% of those included had a severe or moderate disability in comparison to just over 50% in Group 2.
Table 5. Associations between groups of individuals with different patterns of participation and the severity of the disability, place of residence and being a driver or not.
Discussion
The results revealed four clusters describing patterns of participation in places for activities outside the home after stroke, each including aspects that facilitated and hindered participation, that is, influenced the places they visited or no longer visited (). These patterns of participation in places show a complex picture of how different aspects overlap and relate to retained and abandoned participation in different ways and in different combinations, even if almost all the places were familiar. This complexity suggests that we cannot assume that places that are far away, unfamiliar, less frequently visited and are related to a certain activity domain or place are those that people stop visiting after a stroke. We also cannot assume that there are certain places or activity domains that are attached to a certain combination of facilitating or hindering aspects, as all four domains were included in all the patterns of participation. Thus, in line with previous research [Citation2,Citation24–26], to support people in their endeavour to maintain and recapture activities in places outside the home, it is important to understand that different aspects group together in different combinations to either facilitate or hinder participation.
In the four patterns of participation, almost all of the places were perceived as familiar. This was probably related to the people choosing to talk about places they knew; thereby, the potential role of less familiarity was not reflected in the results. The way to the place was also often familiar, 98% of the places had a way that was well-known. Familiarity in relation to activities and places outside has been highlighted as an important aspect in regard to retained participation [Citation24,Citation26,Citation27]. The public space where people with disabilities feel comfortable can become smaller, thereby reducing their possibilities for independent engagement outside the home [Citation2,Citation26]. Taken together, it seems important to maintain familiarity of places and the way to places to avoid changes in participation. Interestingly, a majority of the places were perceived as close or very close the participants’ home when the perceived distance, not the actual distance, was requested. This can in part be related to the participants talking about familiar places and that people mostly engage in activities that they perceive as being a reasonable distance from their home. The location of home, in relation to the possibility of accessing other outside places, has also been emphasized in previous research [Citation2,Citation24]. Cutchin [Citation28] suggested that meaning is created through the connection of person and place that is always in progress, that is, meaning is negotiated through changes in the relationship between person and place. Hence, facilitating activities in places outside the home that people choose to talk about can be considered as important for meaning. The frequency of visits of the places seems to a large extent to be related to how often the activities associated with a particular place need to be carried out, indicating that this is an important aspect to consider. Also, places for recreational and physical activities were frequently visited, demonstrating the importance and need for such places. However, more research is needed to explore what drives people to go to different places e.g., what they do there and/or who they encounter, or other aspects. Taken together, future research needs to deepen the understanding of facilitating and hindering aspects and how people develop meaningful bonds with places for activities outside the home [Citation2,Citation24]. In relation to this, the physical environment, for example, stairs, slopes, gravel are of interest to explore further as well as other aspects of accessibility. In particular, the aspects that people with stroke perceive they need to pay attention to, at the place and/or on the way to the place, would be valuable to explore, Knowledge about aspects that deserves people’s attention can contribute to universal design of the community in which they live. Also, more knowledge about changes in participation in terms of visiting completely new places after a stroke can add to our knowledge.
The severity of disability was as well significantly associated with the clusters of patterns of participation. This was maybe not surprising, as the severity of disability has been found to play an important role in the number and types of places visited after a stroke [Citation5]. The place of residence (city centre/suburb/rural) was as well as transportation to/from the place was significantly associated with the patterns of participation. Previous research [Citation5,Citation10,Citation11,Citation29] has emphasized the critical role of transportation for participation. Limited possibilities for transportation can decrease the right to experience enriching activities, thereby creating injustices. Hence, accessible well-functioning transport alternatives are important and can be seen as a matter of occupational justice [Citation30]. In case of driving cessation following stroke [Citation10,Citation11], it is important to support people with stroke to cope with transportation issues. The extent to which a car was used for travel to the places in relation to the fact that approximately one third of the sample did not drive implies that many of the participants were dependent on another person to travel to different places by car. Additionally, being “accompanied by someone” was shown to significantly differ between the four patterns of participation. The pattern of participation (cluster two) that were characterized by places with mostly retained participation were, to a higher extent than the other clusters, visited together with another person. Places with abandoned participation (cluster four), were to a high extent places that were visited alone. However, these places were mainly reached by car which could indicate that someone else was needed for transportation. This probably reflects the well-known fact that engagement in activities can be influenced by access to social networks [Citation1,Citation31]. Engaging in activities with others is of particular importance to improve participation and wellbeing after brain injuries [Citation31]. Family and friends can create safe and welcoming environments and can also be motivators and work out supportive strategies that facilitate participation [Citation1,Citation16,Citation24,Citation32]. Taken together, in line with previous research [Citation1,Citation16,Citation24,Citation32], the results support that other persons are important to consider in relation to transportation, activities and places, in order to retain and facilitate activities outside the home.
Methodological considerations
The data regarding the places were collected from a rather small sample, which may not fully represent the larger population of people with stroke, even if they were representative of the base population in terms of sex, age and time since injury. However, a large number of places (n = 374) were included in the study, which gives strength to the results. It is important to remember that the participants were instructed to choose a maximum of eight places from the ACT-OUT questionnaire. Therefore, the results do not give a complete picture of all the places included in ACT-OUT, nor of all the places a person would actually find significant to talk about in relation to no change or a change in participation. We also do not know why a particular place was chosen. It is important to keep in mind that the places are heterogeneous, that is, the same types of places (e.g. stores) are not identical. Therefore, it can be vital to identify aspects that facilitate and hinder participation on a more general level, as in this study. As the ACT-OUT is a recently developed instrument, the psychometric properties need further evaluation. The results suggest that the ACT-OUT is relevant to grasp a complexity of facilitating and hindering aspects that need to be considered in rehabilitation to enhance participation after stroke.
Conclusion
The four clusters of patterns of participation in places for activities outside the home illustrate how aspects (frequency, familiarity of the place, perceived distance and familiarity of the way to the place) overlap and are combined in different ways, thereby facilitating and hindering participation in different ways in each pattern. The patterns of participation are associated with retained or abandoned participation, transportation to/from the place, being accompanied by someone else or not and the severity of disability. However they are not associated with place of residence or being a driver or not. Taken together, the results indicate that the potential to be able to foresee patterns of retained (stability) and abandoned participation in self-chosen places for activities outside the home after stroke is difficult. Moreover, to support participation in people with stroke, social support are important to consider in relation to transportation, activities and places outside home.
Acknowledgement
The authors wish to thank the participants who participated in the study. The authors are grateful to PhD OT Ann-Charlotte Kassberg, who conducted parts of the data collection. The authors thank Professor Louise Nygård, Karolinska Insitutet (KI), Sweden, and PhD candidate Isabel Margot-Cattin, KI and University of Applied Sciences and Arts of Western, Switzerland, who together with colleagues developed the ACT-OUT. They shared their experience of the ACT-OUT and supported us during the data collection. We also thank the staff at Region Norrbotten who supported the selection of the participants.
Disclosure statement
The authors report no declaration of interest. The authors alone are responsible for the content and writing of the paper.
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