Living and ageing with stroke: an exploration of conditions influencing participation in social and leisure activities over 15 years

ABSTRACT

Objective: To explore conditions influencing long-term participation in social and leisure activities among people who have had a stroke.

Methods: This study had a qualitative design, using a grounded theory methodology. Data collection was based on in-depth interviews performed 15 years after a first-ever stroke with 10 persons recruited from a population-based stroke cohort in Sweden. The study also included four family members.

Findings: Over time, the stroke meant a changed but gradually normalised life situation. Participation in social and leisure activities was influenced by several transacting personal and contextual conditions changing with time and ageing. Central conditions that emerged from the analysis included personal characteristics, having social and supportive networks, being dependent on others, having access to valued activities and contexts, being motivated to participate, and perceiving sufficient capacity to participate.

Conclusions: Long-term participation after stroke is possible despite impairments, but is influenced by a range of personal and environmental conditions. Stroke rehabilitation should be based on an awareness of this influence and address conditions that change with time and ageing during different phases after stroke.

KEYWORDS:

• Community integration
• grounded theory
• long-term stroke survivors
• qualitative research
• social participation

Introduction

Stroke is one of the leading causes of chronic disability worldwide. People who have had a stroke represent 1.5–2.8% of the European and US populations (1,2) and the prevalence is expected to increase (3). In Sweden, approximately 24 000 people experience a stroke each year (4) and several will live many years thereafter (5). Therefore, key challenges lie ahead when it comes to ensuring a successful post-stroke ageing process.

A stroke is often a sudden and life-shattering event that affects families as well. Many survivors experience disabilities that lead to dependence on others for their activities of daily living (ADL), as well as restrictions in social and leisure participation (6). Considering that such participation has been linked to long-term well-being (7,8) as well as to brain recovery (9), enabling people who have had a stroke to participate in social and leisure activities throughout life is an important goal for both health care professionals and the community at large.

Participation, in this study defined as ‘involvement in a life situation’ (10), is a subjective experience that needs to be understood from the perspective of people with disabilities (11). Factors affecting participation in social and leisure activities after stroke include mood, age, motor and cognitive skills, communication, mobility, marital status and social networks (12–16). Although these findings provide information about potential facilitators and barriers of participation, they do not fully capture subjective experience. Nor is much known about the ways that participation evolves and what influences it long-term after having a stroke. In other words, more research is required to explore perceptions of social and leisure participation over time and with ageing and the impact of changing conditions. Such findings will promote the development of effective and sustainable rehabilitation interventions, ultimately improving quality of life for people living and ageing with stroke.

Therefore, the aim of the present study was to explore conditions influencing long-term participation in social and leisure activities among people who have had a stroke 15 years ago.

Methods

Sampling and data collection

This study is part of a larger project on activity and participation long-term after stroke (17,18). It is based on in-depth interviews with persons who had a first-ever stroke 15 years earlier, complemented with subsequent interviews involving family members. In line with the grounded theory methodology (19), data collection and analysis were performed in parallel to determine the need for additional sampling. As a starting point, 15 potential participants were selected from a one-year population included in the Lund Stroke Register after a first ever stroke (March 2001 to February 2002, n = 416). The purposive sampling strategy (20) aimed for variation regarding age, gender, functional status, living situation and frequency of social and leisure activities, based on quantitative data collected at stroke onset and at follow-ups 16 months and 10 years after the stroke (18,21,22). When eight participants had agreed to take part and been interviewed, two additional persons with stroke were recruited based on the emerging findings, in order to ensure that the data also included the perspectives of those with severe disabilities and with a wider age span. In addition, four family members (two adult children and two spouses) were interviewed to explore if their perspectives differed from that of the person with stroke and to further understand their supportive role. Their narratives also suggested leads to follow in the forthcoming interviews. Theoretical saturation (19) was employed to determine the final sample size.

All participants were contacted by telephone and asked to participate in an interview. The persons with stroke were offered to have someone close to them, such as a family member or caregiver, to take part in the interview. Thus, one participant was supported by a spouse due to communication difficulties, and another was accompanied by an adult child who did not take active part in the interview. All interviews were conducted by the first author (AN) in the participants’ homes (in one case a nursing home). As part of a larger project, the interviews focused on processes influencing participation in social and leisure activities in the long term after stroke. A semi-structured interview guide was used to cover central topics, but the interviews allowed the participants to speak freely and for additional topics to emerge. As the data collection proceeded, the interview guide was slightly modified by the research team to target concepts that required further development. The interviewer also individualised the content of each interview based on previously collected follow-up data. If the participants had problems recalling the past, the interviewer made reference to information concerning his or her previous functional status or life situation to evoke memories of different time periods. A separate interview guide was constructed for the family members, focusing on their role and experiences related to their relative’s participation in social and leisure activities. Each interview lasted 1–1½ hours and was recorded and transcribed verbatim. The interviewer also made field notes during and immediately after each session describing the interview situation and any thoughts or ideas that came up.

Characteristics of the participants with stroke

The participants with stroke consisted of five women and five men with ages ranging from 33 to 88 years (mean 72/median 76). At the time of the interviews, the majority of them lived with a spouse (n = 7) and in ordinary housing (n = 9). All were retired or on sick leave except one participant who was working full time. Two participants had had a recurrent stroke. Two were dependent on others for personal ADL and used a wheelchair, whereas the majority managed on their own but experienced some mobility limitations outside of the home, especially when going longer distances. Four participants experienced difficulties in their everyday life related to cognitive impairments and one had verbal communication problems. Four participants were, despite being less active compared to before the stroke, mostly content with their participation in social and leisure activities. Three described substantial participation restrictions and were dissatisfied with their situation, two experienced their participation as unchanged, and one experienced an increased level of participation. Characteristics of the participants with stroke at stroke onset and previous follow-ups are outlined in Table 1.

Table 1. Characteristics of the participants at stroke onset and previous follow-ups (n = 10).

Participant no.	1	2	3	4	5	6	7	8	9	10
Education*	Average	Average	Low	High	High	Low	Low	Low	Average	Low
Occupation before stroke	Studying	Working	Sick leave	Working part time	Retired	Retired	Working	Working	Sick leave	Retired
Living situation before stroke	Co-habiting	Co-habiting	Co-habiting	Co-habiting	Co-habiting	Co-habiting	Alone	Co-habiting	Co-habiting	Alone
Stroke severity (NIHSS)	Mod. severe	Moderate	Mild	Mild	Mild	Mod. severe	Mild	Mild	Mild	Moderate
Cognitive impairment after 16 months (MMSE ≤24)	No	No	No	No	No	Yes	Yes	No	No	No
Self-rated motor impairment after 16 months	Upper extr.	Upper & lower extr.	Upper extr.	No	No	Upper & lower extr.	Upper & lower extr.	No	Upper & lower extr.	Lower extr.
Disability after 10 years (MRS, 0–5)	1	2	0	2	0	5	0	4	2	1
Social and leisure activity after 10 years (FAI-CSC, 0–9)	5	9	9	8	9	3	3	3	0	8

*Low ≤ 9 years, Average = 10–12 years, High > 12 years/univ.

NIHSS: the National Institutes of Health Stroke Scale. Mild = 0–4, moderate = 5–14, mod. severe = 15–24, very severe = 25–42 (47).

MMSE: Mini Mental State Examination (48).

MRS: Modified Ranking Scale. 0 = no symptoms, 1 = no significant disability despite symptoms, 2 = slight disability, 3 = moderate disability, 4 = moderately severe disability, 5 = severe disability (49).

FAI-CSC: Frenchay Activities Index-Community Social and Civic life domain. Graded 0–9, from never to at least once per week (18).

Note: Age and gender not included in the table to limit identification.

Data analysis

The interviews were analysed using a grounded theory constant comparative method (19). This approach aims to create a theoretical framework grounded in the collected data and takes into consideration the context in which something happens, causal conditions, strategies and consequences (19,23). For this study, the analysis specifically focused on conditions influencing participation in social and leisure activities. The narratives told by the participants with stroke comprised the foundation of the analysis, and experiences shared by the family members complemented and enriched the data.

The analysis was an iterative process consisting of several steps, including open coding, development of categories and sub-categories through constant comparison, and finally integration of categories into a central theme (19). Conditions emerging as influential on participation in social and leisure activities constituted six main categories, each comprising sub-categories representing different dimensions. The theme illustrated the transaction of conditions over time (Table 2). The first author (AN) performed all initial coding and created preliminary categories. Thereafter, AN and the last author (EML) worked closely together to develop the analysis. The findings that emerged were validated several times by the remaining authors. Besides the transcribed interviews, field notes and memos were essential for the analysis and important in increasing the researcher’s insight and awareness of self during the analysis. Even though the analysis allowed for interpretation of meaning by the researcher, all emerging categories were constantly checked against the interview data to be verified or rejected.

Table 2. Overview of the theme, main categories and sub-categories describing conditions influencing participation in social and leisure activities.

Theme	A dynamic transaction of personal and contextual conditions changing with time and ageing.
Main categories	Personal characteristics	Having social and supportive networks	Being dependent on others	Having access to valued activities and contexts	Being motivated to participate	Perceiving sufficient capacity to participate
Sub-categories	Basic personality traits, attitudes and ideologies Internal resources Time of life	Maintaining previous and making new social contacts Receiving informal support Receiving professional support and rehabilitation	Being dependent on other people’s help Being dependent on other people’s priorities and needs	Having efficient transportation Being in a supportive environment Having sufficient financial resources	Perceiving a positive value of activities Having come to terms with the situation	Experiencing stroke related impairments and other health issues Individual consequences of changes in function and health

Ethical considerations

The study was approved by the regional ethical review board in Lund (no. 2016/179). Verbal and written information was provided, and participants were informed about their right to refrain from answering any questions or to withdraw from the study at any time. All data was handled confidentially, preventing identification of individuals.

Findings

The interviews revealed that over time and with ageing, most remaining consequences of the stroke had gradually become integrated into the participants’ lives, and other personal and contextual conditions continuously influenced their participation. These findings formed the theme: ‘A dynamic transaction of personal and contextual conditions changing with time and ageing’, emphasising that the conditions for participation in social and leisure activities were interconnected and changeable. Six main categories of conditions emerged, each with a set of sub-categories, as presented in Table 2. Figure 1 illustrates the transaction of the main categories of conditions over time. The category ‘personal characteristics’ is located at the core, illustrating its central role for all other conditions. Around this, different interacting contextual conditions are situated, including ‘having social and supportive networks’, ‘being dependent on others’ and ‘having access to valued activities and contexts’. Together, the personal and contextual conditions influence the participants’ motivation and perceived capacity to participate, ultimately leading up to the perceived participation. The returning arrow emphasises how engagement in social and leisure activities can in turn influence the conditions.

Figure 1. Illustration of the transaction of conditions influencing participation in social and leisure activities over time.

Personal characteristics

Personal characteristics, including personality traits, internal resources and age, emerged as a foundation for the participants’ life choices and were consequently important for all other conditions.

Basic personality traits, attitudes and ideologies

Individual personality traits influenced how the participants lived and experienced their life before as well as after the stroke. Some described themselves as always having been socially active people, while others were more introvert. Some had a generally positive attitude, while others tended to be more negative. They also highlighted personality traits such as being stubborn, never giving up and wanting to be in control. In addition, ideologies traced back to childhood, for example, placing high value on appearance or not being a burden, could influence participation through a reluctance to accept help or to use mobility devices in public.

It’s no use feeling sorry for oneself./ … /I guess I inherited that [behaviour] from my parents. They were farmers and often less fortunate, with many children. And everything had to be solved, and I havent’ been … I like some challenges and so … to volunteer to help. And it also depends on the person itself, how you are, if you are positive or negative.

Internal resources

Internal resources consisting of knowledge and skills acquired, for example, through previous attempts to solve problems and through experiences during post-stroke rehabilitation, influenced participation by providing a sense of control and strengthening the perceived capacity. Important resources that emerged from the interviews included having good problem solving skills and adequate knowledge about stroke.

Time of life

The experience of having a stroke and its consequences on participation was described differently depending on at what age and time in life the stroke had occurred. In particular, the participants’ expectations regarding participation, their plans for the future and the support provided from society after the stroke differed. Participants who had started to adjust their life to ageing and retirement before the stroke described less dramatic changes compared to those struck earlier in life.

Having social and supportive networks

Another key condition was having social and supportive networks. Social networks encouraged and created opportunities for social interaction, whereas supportive networks provided different kinds of help and support that directly or indirectly enabled participation. Such support could be informal (e.g., provided by family and friends) as well as professional (e.g., care and rehabilitation).

Maintaining previous and making new social contacts

The participants’ social networks most often consisted of family members but also included friends, neighbours and colleagues. Many reported that the number of people with whom they had regular contact had gradually decreased over time, as a direct result of the stroke, because people passed away or due to changes in their life situation, resulting in lower social participation. Those who had a wide social network before the stroke were less vulnerable when contacts were lost. Having something to offer and being needed and valued helped to sustain social as well as spousal relationships over time. Social networks could also be replaced, and some participants described making new contacts through engagement in leisure activities or socialising with neighbours.

Receiving informal help and support

Various kinds of practical support from family members made participation in valued social and leisure activities possible. Most participants only required little support, but in some cases participation was achieved through another person. For example, one participant was able to participate in activities such as gardening, reading and playing bingo by giving directions to her husband. Friends and family members also provided emotional support that encouraged participation when the participants’ own confidence and motivation wavered. In particular, support including open communication, problem-solving and strengthening autonomy facilitated participation.

Receiving professional support and rehabilitation

Several participants described how the initial rehabilitation phase had enabled them to return home, and how psychological support received during different stages of recovery was important for their self-perception and acceptance of the stroke. It also helped some of the participants to pursue new social and leisure activities rather than focusing on the past. Being truly seen and recognised was highlighted as particularly important. In contrast, experiencing unmet rehabilitation needs and insufficient information on how to handle physical and cognitive impairments were related to activity avoidance and withdrawal from social situations. Not all participants experienced any need for rehabilitation but perceived that they had managed well on their own.

Being dependent on others

Even though the participants valued the help and support they received, being dependent on others emerged as a restricting condition influencing their participation in social and leisure activities.

Being dependent on other people’s help

Being dependent meant not being able to plan and manage your own time and activities, and led to a vulnerability to any changes in the support provided. Therefore, engagements that required other people’s help were sometimes excluded in favour of things that could be done independently. Being dependent on a spouse was more accepted than having to rely on external help, but participants also described negative consequences of being supported by an ageing spouse whose ability to provide support decreased over time.

Being dependent on other people’s priorities and needs

Several participants described how their social participation relied on other people taking the time to visit them. Friends, neighbours and adult children were often busy, and some participants were disappointed with acquaintances who had stopped calling or visiting them after the stroke. Others were satisfied with the frequency of visits and understood the priorities of their friends and family.

Well … now they have families of their own, which they didn’t have back then. And [the son] has got a little rascal [laughs] … so they are busy. But they come … I hear from them at least every week.

Living with someone influenced participation in social and leisure activities in both positive and negative ways. Besides easy access to support and social contact, it also meant having to adjust one’s own activities to the other person’s needs and interests. Some participants had restricted their own participation in leisure activities to take care of an ill or ageing spouse. How the couple communicated their feelings and needs, their relationship history and the level of dependence appeared to be important for how the shared life influenced participation.

Having access to valued activities and contexts

Having access to valued activities and contexts emerged as a prerequisite for participation. This could include having efficient transport to and from activities, being in a supportive environment and having sufficient financial resources.

Having efficient transport

The participants repeatedly described issues with getting to and from different places and how this restricted their participation. Not only the availability, but also the perceived efficiency of different modes of transport were important. The perceived efficiency was influenced by several factors, including reliability and flexibility, the mode of transport used before stroke, the residential environment, distance to activities, current functional limitations and available support. Hence, changes in the living situation influenced whether a certain mode of transport was sustained over time. Being able to drive a car was described as a facilitating condition for participation, whereas the consequences of driving cessation differed among participants depending on whether or not they had access to well-functioning alternatives. As narrated by one participant:

Well, after that [stroke] I didn’t drive anymore. I wasn’t allowed/ … /It is terrible, I’m not able to get anywhere. No, really I can’t, since … if I take the bus I will get off at the wrong bus stop. I don’t know how to orientate, I get lost here [in the village].

Being driven by car by a family member was a preferred alternative, but depended on being able to get into an ordinary car. The special transport service available to some of the participants was not a satisfactory alternative because of frequent delays and unreliability. A few participants with minor disabilities who had used to travel by bus before the stroke continued using this mode of transport. However, most participants did not use public transport due to feelings of insecurity, difficulties getting to and from the bus or train stops, or because it was not considered reliable and time efficient.

Being in a supportive environment

For participants with balance or walking difficulties, and particularly for wheelchair users, having access to different environments was not only about getting to a location, but also the accessibility of the location as such. Environmental barriers such as stairs, uneven ground or lack of parking spaces limited their possibility to take part in valued activities, as described by one participant who was no longer able to visit his country house:

But … there is woodland and that is … I find that difficult. I cannot drive in the forest or on other such ground with this [the wheelchair]. It will only sink through. And then you get stuck so no …

In contrast, being in a supportive environment could allow participation despite mobility limitations. One participant limited his social visits to friends with wheelchair accessible homes, one of whom had even rebuilt his entrance to accommodate the participant’s needs. Using assistive devices or having a special parking permit could also compensate for functional limitations and accessibility problems.

Other environmental conditions that facilitated social and leisure participation included living in an area with a wide range of available activities, living close to family and friends or in an environment where people had similar interests or life situations. For one participant, moving to a nursing home had led to increased participation thanks to the range of activities offered there, whereas living in a house with a garden enabled some participants to pursue their interest in gardening. Certain contexts, such as a work environment, a clubhouse or a vacation resort, could be important platforms for social activities. Consequently, exclusion from these contexts negatively influenced participation. For example, early retirement was described as a difficult transition that meant losing a large part of the social network. On the other hand, several participants reported that retirement meant having more free time and energy for activities such as hobbies and traveling.

Having sufficient financial resources

The participants’ finances also influenced their possibilities to take part in social and leisure activities. A lesser income due to early retirement could mean limited access to activities such as going to the movies, going out for dinner or playing golf. In contrast, those who were financially independent were able to prioritise leisure activities, for example, by paying for household services. Furthermore, the participants’ housing situation, which influenced their participation, was dependent on their financial situation.

I cannot do anything. I cannot afford to live here but I really cannot afford to move either./ … /maybe go to the movies, instead of just looking at … sure I have lots of videos but it isn’t the same. Or go to a bar and have dinner./ … /No, I really can’t afford it. I have cut down on almost everything, but still I don’t get the money to last so …

Being motivated to participate

The participants’ own motivation to engage in social and leisure activities emerged as a fundamental driving force for participation. Being motivated stemmed from a combination of personal and contextual conditions and was largely based on the perceived value and effort of activities as well as having come to terms with the post-stroke situation.

Perceiving a positive value of activities

Participants who experienced a positive value related to a certain activity or context were more motivated to participate. Some social and leisure activities contributed to feeling needed or important or strengthened the personal identity. Other activities were valued for providing joy, relaxation, social interaction or simply distraction. In order to be valued, the activities needed to match the participants’ interest, abilities and self-perception. As exemplified by one participant who described her reluctance to take part in activities at a centre visited by people with more severe cognitive and physical disabilities:

I was sent to do activities at this place for people with dementia … and people in wheelchairs and … I was there for a while as long as they could offer me something that made sense to me. But to go there and just drink coffee … I didn’t want that, I don’t drink coffee and I don’t like cookies … it is just too trivial … playing games and stuff. At that time I didn’t want to … I didn’t think it was something for me.

In addition, the perceived value of an activity was balanced against the expected effort or negative consequences. Participants described avoiding activities that left them exhausted or in pain the next day, or activities perceived as risky (e.g. for falls). One participant had decided to give up all leisure activities to avoid stress that could increase the risk of having a second stroke.

Having come to terms with the situation

Fifteen years after the stroke, most participants had accepted and learnt to live with its consequences. As described by one participant:

It’s almost like it was before … I just have to think a bit differently. I mean, I do the same things as everyone else but it just takes longer./ … /Sometimes I think I should have done it this or that way, but now I have to spend this amount of time instead. I am okay with that.

Those who had not yet come to terms with their situation described more signs of depression and lower motivation for participation. Hence, acceptance emerged as a facilitating condition as it supported motivation. However, complete acceptance or resignation also emerged as factors that could reduce the drive towards participation. Since ageing was associated with a ‘normal’, and thus acceptable, decline in health as well as participation, with increasing age, participants expressed lower expectations and motivation to participate:

I don’t care as much. Well … I manage anyway./ … /Age takes its toll on you, you know. I don’t need much anymore.

Perceiving sufficient capacity to participate

In order to engage in social and leisure activities, participants needed to feel that they had the required physical and cognitive capacity. Experiencing stroke-related impairments or other health issues influenced the perceived capacity, but its consequences on participation differed among participants.

Experiencing stroke-related impairments and other health issues

The experience of sudden physical and cognitive impairments changed how the participants’ perceived their own capacity compared to before the stroke. With time, most remaining impairments were integrated into a new ‘normal’, whereas other health issues and ageing continued to influence participation. One participant started experiencing participation restrictions several years after the stroke due to an amputation, and another described his arthritis as the primary reason for giving up valued activities. Hence, over time, a complex interaction of primary and late effects of stroke, other diseases and ageing influenced the perceived capacity.

Individual consequences of changes in function and health

How changes in function and health influenced the perceived capacity and participation varied among the participants. Several of them had excluded or replaced social and leisure activities that they could no longer do, whereas others had continued with their previous interests. For example, one participant with a long-term interest in golf described why he had to stop playing after the stroke:

It’s a shame. Because it’s not possible to do it [play golf] properly really, even though it’s my right side, because my coordination is off.

Whereas another participant felt able to continue playing:

I can’t do a golf swing using both arms. I can’t, because it stops halfway. So I have to swing with one arm only. It’s even more fun actually, to do long shots with one arm.

The two quotes illustrate that changes in function and health were not necessarily related to participation restrictions, but depended on other personal and contextual conditions. Experiencing cognitive impairments, pain, fatigue or psychological health issues were described as especially challenging to overcome and often resulted in long-term participation restrictions.

Discussion

To explore conditions influencing social and leisure participation up to 15 years after first-ever stroke, we addressed the subjective concept of participation as defined by persons with stroke. Our findings show that dynamic transactions of personal and contextual conditions changing over time and with ageing continuously influence participation in social and leisure activities. Fifteen years after onset, the stroke seems no longer to be a main concern but has been integrated into a new normality where other life events continue to shape the experience of participation. Our findings are in line with previous qualitative research indicating that social and community participation after stroke is a dynamic, complex and individual process affected by several factors related to the person as well as the environment (24,25). However, most studies only look at the first years after stroke and do not fully incorporate how people’s experiences vary over time since stroke. Hence, our study contributes to an improved understanding of how different conditions influence participation in social and leisure activities from a long-term perspective and as people age with disability.

Our findings show that personal characteristics, including age, are central to the long-term experience of participation. This adds to previous studies linking social participation to personality type and coping style after stroke (24,26). There is also research indicating that a person’s age at stroke onset could influence the support provided from health care and society (27,28) as well as the experience of unsatisfied rehabilitation needs (29).

Our findings also highlight the influence of various environmental conditions. For example, having strong social and supportive networks facilitated participation among our participants whereas difficulties sustaining or creating social relations resulted in reduced social interactions. An important finding is that the commonly described vulnerability of social networks after stroke (24,26) seems to persist and even increase over time and with ageing. We also found that family members were central to participation. Even though several studies stress that members of the social network should be encouraged to strengthen autonomy, self-efficacy and identity of the person with stroke (26,30,31), families rarely receive any education in how they can promote participation (30).

Having efficient transport emerged as a central condition for participation outside the home, confirming previous studies linking reduced walking capacity (32) and loss of driver’s licence (33) to restricted community participation and social isolation. Importantly, our findings indicate that initial outdoor mobility problems after stroke are poorly compensated for over time. To avoid long-term participation restrictions, community mobility is an important issue to address in early as well as later phases after stroke, including driving assessments and guidance to well-functioning alternatives to car-driving. In line with other studies (34,35), our findings highlight that public transport is associated with numerous perceived barriers related to physical as well as cognitive demands, and that available transport might not be used if not perceived as efficient.

Motivation is considered central to people’s behaviour (36). Overall, our results indicate that a combination of personal and environmental conditions influence the motivation to participate in social and leisure activities after stroke. This is in line with the notion of motivation as more than an internal personality trait, but rather a function of personal, social and contextual factors (37). Our findings also support that lack of motivation can result from not valuing an activity, not feeling competent to do it or not believing it will yield a desired outcome (38). Worth noting, individuals’ beliefs about their physical and cognitive function seem to influence the perceived capacity, and consequently the motivation to participate.

Our findings also indicate that interactions with rehabilitation professionals could influence long-term participation. This adds to previous research looking at psychosocial processes following stroke rehabilitation (31). Taken together, post-stroke care and rehabilitation which is based on an awareness of each patient’s personality traits and beliefs about impairments has the potential to strengthen the internal resources and perceived capacity. To promote long-term participation, it is also important to understand the subjective values and difficulties related to different activities and contexts, and to guide people who have experienced a stroke in finding activities that are meaningful to them. Therefore, we suggest updating the current Swedish national guidelines for stroke care (39), emphasising that a stronger awareness of the psychosocial needs of people who have experienced a stroke is warranted, including how these needs change over time and with ageing.

Some of the conditions identified may not be specific to people with stroke but would apply to the ageing population in general. Participation in leisure activities often decreases with age (40) and older individuals may turn to activities that are more sedentary as physical function declines (41). However, the lower levels of community and leisure participation demonstrated among people with stroke compared to age-matched healthy persons (42) warrants specific attention. A stroke could contribute to accelerated ageing and an increased vulnerability for age related physical and cognitive decline (43). Our findings also show that experiences before and after the stroke influence the long-term participation. Based on life course paradigms, such as the life course theory (44) and the life thread model (45), such longitudinal influence is probable. However, the retrospective nature of our data limits definite conclusions and calls for studies exploring long-term trajectories of participation among people with stroke prospectively.

Turning to methodological considerations, grounded theory is a suitable method for exploring processes or actions and for explaining human behaviour (19,23). The researcher strives for sensitivity (to what the data says) rather than objectivity, and the findings are considered an interpreted illustration of the studied reality, constructed through the researcher’s interaction with the participants and influenced by his/her perspective, previous knowledge and research tradition (23). To strengthen the validity of our analysis, the authors supported each other in remaining open to new ideas and emerging findings. The different clinical and research backgrounds of the authors, representing physiotherapy (AN), gerontology (SI), nursing (A-CJ), neurology (AL) and occupational therapy (EML, SI), also contributed to an interdisciplinary and nuanced understanding of the findings.

In line with the principles of grounded theory, we used a purposive and theoretical sampling procedure. As qualitative studies do not aim to be representative but rather strive for transferability, our sampling strategy aimed for variation in order to gain different perspectives and rich data. A notable strength of this study is that the participants were recruited from a population-based cohort, also including people with communicative difficulties and those living in residential care, that is, groups often excluded in stroke research. Pilot interviews were performed to improve and develop the interview guide. Limitations include the retrospective data collection with potential risk of recall bias. Using retrospective data from a single point in time also limited our possibilities to draw conclusions about the processes of change and adaptation. It is possible that if other participants had been interviewed, additional perspectives had been shared. Moreover, due to changes in society and post stroke care, people who sustain a stroke today may experience their participation differently. There may also be influencing conditions not covered, for example, conditions related to cultural and political systems (46).

Conclusions

Over a period of 15 years after a first-ever stroke, dynamic transactions of personal and contextual conditions that change over time and with ageing continuously influence participation in social and leisure activities. Therefore, rehabilitation interventions aiming to promote long-term participation among people who have experienced a stroke should address these changing conditions during different post-stroke phases. In addition, an improved understanding of the individual strategies used by long-term stroke survivors to cope with the post-stroke life situation and to participate in social and leisure activities over time is needed.

Declaration of interest

The authors report no conflicts of interest.

Acknowledgment

We would like to thank the participants who willingly shared their experiences with us.

Additional information

Funding

Funding was provided by Ribbingska Foundation in Lund; Region Skåne; Faculty of Medicine, Lund University; the Foundation of Färs & Frosta – one of Sparbanken Skåne’s ownership foundations; the Swedish Heart-Lung Foundation; the Freemasons Lodge of Instructions EOS Lund; the Swedish Stroke Association. This study was accomplished in the context of Centre for Ageing and Supportive Environments (CASE), financed by the Swedish Research Council for Health, Working Life and Welfare (FORTE).