Annie McCluskey, Community Based Health Care Research Unit, Faculty of Health Sciences, The University of Sydney, Lidcombe campus, PO Box 170, Lidcombe, NSW 1825, Australia. Email: firstname.lastname@example.org
Background/aim: Reduced walking ability and loss of confidence are common after stroke. Many people cannot drive or use public transport, which can restrict participation. This qualitative study aimed to explore the experiences and attitudes of people following stroke to travelling outdoors early after hospital discharge.
Methods: Two semi-structured interviews were conducted with 19 people post-stroke, all of whom were receiving rehabilitation to increase outdoor travel. Mean age was 68.6 years (SD 11.7 years). Eight significant others also participated. Interviews were conducted at home (median 21 days post-discharge), with a second interview three months later. Questions focussed on common destinations, modes of travel including driving when relevant and factors that influenced outdoor travel. Qualitative data were analysed using constant comparative (grounded theory) methods, resulting in themes and categories.
Results: People with stroke were categorised as either a hesitant or confident explorer, in relation to walking, catching public transport and driving. Factors influencing outdoor travel included their emotional disposition, having meaningful destinations, expectations of recovery and the sphere of influence, including family and therapists. These factors could have an enabling or restricting effect. A pre-stroke walking habit also positively contributed to outdoor travel. Gate-keeping by therapists, general practitioners and family members seemed to adversely affect travel.
Conclusions: This emerging theory offers insights into the experiences and attitudes to outdoor travel of people who were ambulant and participating in community rehabilitation following a stroke. Future research could explore the experiences of people with more severe mobility, cognitive and communication problems.
Stroke affects over 60,000 Australians each year (National Stroke Foundation, 2010) and is a major cause of long-term disability. In 2003, approximately 282,600 Australians had a persistent disability due to a stroke (Australian Institute of Health and Welfare, 2006), which restricted participation in the community. The majority of people experience participation limitations following stroke, with 60% having difficulty in moving around at home or travelling outdoors, and 83% experiencing transport limitations (Australian Institute of Health and Welfare, 2006). Availability of car, bus and train transport is associated with better quality of life, health and longevity, and lower rates of institutionalisation (Metz, 2000). However, many people are isolated following a stroke due to limited transport and walking ability.
Walking is often compromised following a stroke. In one study, 63% of participants self-identified as being housebound (Pound, Gompertz & Ebrahim, 1998) due to poor balance and weakness, as well as environmental problems including uneven pavements, kerbs and steps. The consequence of not getting out is that many valued roles are lost (Pound et al., 1998). Another study found that people who achieved independent community walking following stroke often felt reluctant or unable to use public transport, and still relied on others to travel outdoors (Lord, McPherson, McNaughton, Rochester & Weatherall, 2004). During rehabilitation, walking practice needs to be generalised to local community environments, to increase confidence in those settings. For wider community mobility, there is also a need to practice other skills such as using public transport.
One randomised controlled trial described a complex therapy intervention, which helped improve outdoor walking and travel following stroke (Logan et al., 2004b; Logan, Walker & Gladman, 2006). In that study, the control group received a single home visit and leaflets describing disability transport services. The intervention group received a home visit, leaflets and up to seven intervention sessions by an occupational therapist. Sessions were individually tailored and included escorted walking outdoors to increase confidence, practice crossing roads and bus travel. Advice about return to driving was also provided. Outcomes were measured at 4 and 10 months. Participants in the intervention group were twice as likely to get out of the house as often as they wanted compared with the control group, after four months (relative risk 1.72, 95% CI 1.25–2.37) and 10 months (relative risk 1.74, 95% CI 1.24–2.44), and the number of monthly outings doubled. Clinical guidelines in Australia (National Stroke Foundation, 2010) recommend that people following stroke receive multiple escorted outdoor journeys and help with return to driving, consistent with that 2004 randomised trial.
Although the outdoor journey intervention has been shown to be effective with people up to one year following a stroke (Logan et al., 2004b), it was unknown if, or how well, the intervention would be tolerated by people early following stroke, that is, within weeks of hospital discharge, nor how feasible it was for local therapists to deliver. As part of a recent study, occupational therapists and physiotherapists across five community rehabilitation services in Sydney were assisted to provide the intervention described by Logan et al. (2006) to people following stroke (McCluskey & Middleton, 2010b). Therapists enabled people following stroke to practice walking over rough ground, negotiate kerbs, walk and carry items in busy shopping malls and on public transport, and prepare to resume driving when relevant. During that time, the experiences of participating clients were collected.
The primary aim of this study was to explore the experiences and attitudes of people following stroke to travelling outdoors early after discharge from hospital.
A qualitative design and grounded theory approach were used for data collection and analysis. Grounded theory helps to explain processes such as travelling or resuming driving, and conditions that influence a process (Strauss & Corbin, 1998). Ethical approval for the study was granted by a university and an area health service ethics committee.
Participants and recruitment
People following stroke were recruited through one outpatient and one community rehabilitation service in Sydney, Australia. Two of five publicly funded services in a larger study (McCluskey & Middleton, 2010b) were invited to help with the recruitment.
To be eligible for inclusion, individual participants had to: have a diagnosis of stroke, be aged 18 years or older and community-dwelling, able to give consent, willing to participate in an interview and be participating in 1:1 occupational therapy and/or physiotherapy sessions to increase outdoor journeys. Participants were excluded if they had moderate to severe cognitive or communication impairments, which precluded them giving informed consent (determined at the first meeting or by telephone), if they did not speak, read or write the English language, or required a healthcare interpreter.
Treating therapists asked people following stroke if they were willing to be interviewed. If they agreed, they were provided with written information, and those who wished to participate then gave written consent. Participants were also invited to have a family member or friend present at the same interview; they also provided written consent prior to being interviewed.
Consecutive, convenience sampling was used (Portney & Watkins, 2009). Typically grounded theory methods use purposive sampling to intentionally include people with particular characteristics. However, funding allowed all those who were involved in the outdoor journey intervention during the study period to be interviewed, thereby maximising the sample size.
Two interviews were conducted per participant, by the second author or by the first and second author together. Interviews were conducted at home or a hospital site. The first interview was conducted three weeks post-discharge. The second interview occurred approximately 90 days later, after the outdoor journey intervention had ceased. Interviews were 20–60 minutes long, and guided by a written schedule, to help improve consistency. Examples of questions were: ‘Tell me about your rehabilitation since you left hospital’, ‘How have you been spending your day?’, ‘What are you focusing on in therapy sessions?’, ‘What are your goals and plans for the next three months?’ and ‘What would you like to be doing three months from now?’ If outings and travel were not raised during the follow-up interview, participants were asked additional questions about outings, destinations, modes of travel, factors influencing outdoor travel and their recall of therapy sessions.
Each interview was taped and transcribed. Data collection and analysis were conducted concurrently. Questions became more focused as key themes and categories were explored. For example, questions were asked about why participants had decided to take a particular mode of transport, how they negotiated travel difficulties and reasons for outdoor travel. Questions about walking, catching a bus or train and driving were included in the interview schedule and were discussed by most participants.
Data analysis was carried out by two of the researchers. The first author was an occupational therapy honours student with minimal clinical experience. The second author had worked in rehabilitation for over 20 years and conducted similar studies with community-dwelling adults. None of the researchers were employed by the health services, where the research was conducted.
Using the paper transcripts, similarities and differences were explored within and between participants using open coding techniques (Strauss & Corbin, 1998). Quotes were compared, categorised and given labels. Axial coding was used to determine relationships between initial categories, to help further develop the emerging theory. For example, quotes that had been categorised under the label of ‘friend’ or ‘professional’ were merged into the category labelled ‘people of influence’. The same axial coding technique was later used to link ‘destinations’ and ‘potential outings’ under the category labelled ‘outings’. Initially, there were 37 labels for quotes, reducing to eight separate categories.
Peer checking of coded text was conducted by both authors. No member checking occurred. Although data saturation is a goal of grounded theorists, this stage was not reached by the time all participants had been interviewed.
A sample of 19 people following stroke was interviewed, with a mean age of 68.6 years (SD 11.7). Two thirds were male (n = 12, 63.2%). The majority lived with a family member (n = 16, 84.2%). Median time post-stroke was 58 days (interquartile range (IQR) 49–111). Median time post-discharge was 21 days (IQR 7–40). See Table 1. Seven close family members (four spouses; three daughters) and one friend participated in the interviews.
Table 1. Characteristics of participants with stroke (n = 19)
SD = standard deviation; IQR = interquartile range.
Mean age (years, SD)
Time since stroke (days) median (IQR)
Time since discharge (days) median (IQR)
Gender (n, %)
Independent mobility indoors (n, %)
Living situation (n, %)
With spouse/other family
Driving status pre-stroke (n, %)
Driving status post-stroke (n, %)
Key findings and categories
Following exploration of the process of travelling outdoors following stroke, two types of participants and tree common modes of travel were identified. The two broad categories of participants were hesitant explorer and confident explorer, based upon a person’s feelings about resuming outdoor travel. Three modes of travel were discussed, namely, resuming walking, catching public transport– sometimes for the first time – and driving. Although most participants could be categorised as a hesitant or confident explorer they were not necessarily hesitant or confident across all three modes of travel. Therefore, we developed a typology (Fig. 1) to explain where participants fitted on the continuum, from hesitant to confident explorer for different modes of travel, and factors or conditions that contributed to their hesitance.
A hesitant explorer was someone who was concerned about resuming outdoor travel. They were worried about falling, personal injury or failing their driving test. A confident explorer was someone who set more ambitious goals, was more optimistic about their recovery and practiced outdoor walking more consistently.
Four factors or conditions influenced whether a participant was categorised as a hesitant or confident explorer. These factors include: their emotional disposition, having meaningful destinations to go to, expectations of recovery and their sphere of influence.
Factors influencing outdoor travel
A person’s emotional disposition partly determined how they felt about exploring their community. People categorised as anxious were more likely to sit at the hesitant end of the continuum, whereas people not categorised in this way felt more confident about going out into the community. The quote below describes an ‘anxious’ disposition towards walking and future driving.
There are still some things that feel so far in the distance, I don’t know why I’m thinking that way... I seem to lack confidence this time. (P1)
People who had meaningful destinations were more likely to travel outdoors. These destinations provided a focus for therapy sessions and enhanced confidence. Places mentioned by participants that were meaningful included local pubs and clubs, shopping centres and a friend’s house. The following quote describes one participant’s goals:
One, I’d like to be going shopping. Two, I’d like to be able to go to the club and have lunch with all the girls down there like we used to … And the third one, I want to be able to go up to the trotting club. (P18)
On the contrary, participants with nowhere to go felt differently: Don’t want to go anywhere. Nowhere to go anyhow (P8).
Greater expectations of recovery positively influenced how participants felt about outdoor travel. One participant had high expectations of her recovery and felt optimistic about the future. I’m doing my best… So definitely I won’t give up, I will be an active person (P11). When participants had low expectations of a prompt recovery, they often avoided pre-stroke activities: There are a lot of things I wouldn’t attempt that I used to do before (P1).
A participant’s sphere of influence, which could include family, friends and/or therapists, played a role in determining whether a person was hesitant or confident. People with influence could be restrictive or encouraging of increasing outdoor travel. Some of these people were restrictive. They discouraged or stopped participants from going out alone, crossing roads or catching public transport. The quote below is from a woman who was concerned that her husband would have difficulty at the shops or when catching on the bus because of dysphasia.
Interviewer: Why are you not allowed to go on your own? (question to P6, person with stroke)
Response from the wife of P6: I would worry too much [about him]… not being able to perhaps say what he wanted to… I have probably been a bit over-protective.
In another example, criticism from the sphere of influence caused a participant to lose confidence: An ex friend told me I can’t do a… thing. (That) got stuck in my mind. So I’ve lost my confidence (P13). People in the sphere of influence positively influenced outdoor travel if practical support was available, for example, car rides. People following stroke were more inclined to travel outdoors when driven to their desired destination.
I’ve got friends from the bowling club too that will take me anywhere I want to go. So I’m not stuck for … transport. (P14)
These four conditions, their emotional disposition, having meaningful destinations, holding expectations of recovery and their sphere of influence appeared to determine where people were placed on the explorer continuum. People with a more relaxed emotional disposition, several places to travel to, higher expectations of recovery and an encouraging sphere of influence were more likely to be confident explorers. Conversely, those who were anxious, had few places to travel to in the community, had low expectations of recovery and a restrictive sphere of influence were more likely to be a hesitant explorer. The three modes of travel identified by participants will now be presented: resuming walking, catching public transport and driving.
Walking referred to outdoor mobility, with or without an aid. Participants walked shorter distances initially after leaving hospital increasing to longer distances with time. They walked with an escort or alone. Reasons for walking included for leisure activities, for pleasure, as part of a walking habit, to attend appointments or as a mode of transportation.
All participants considered walking as a fundamental activity of daily living. All 19 people following stroke in this study could walk around their home, with or without an aid at the time of discharge, but few could walk confidently outdoors. None used a wheelchair. Thirteen of 19 participants had walked for leisure on a daily basis pre-stroke. Consequently, resuming walking was frequently mentioned as a goal.
Walking…that’s the biggest thing, I suppose if I could get back to some sort of normality with that… I’d just like to be back to where I was before. (P1)
People who walked regularly pre-stroke were more enthusiastic about resuming their walking habit and more inclined to challenge themselves than those who did not walk previously.
Attitudes and perceptions towards resuming walking outdoors ranged along the continuum. Ten participants were classified as hesitant explorers. The following participant felt that he needed more practice to gain strength and confidence, and to feel safe while walking outdoors.
No, it’s always a bit dangerous… I think that I’m a bit apprehensive about walking around. If I start to get stronger, I’ll go for more walks. (P2)
Participants often felt hesitant about journeys taken alone in the community. People who had not yet ventured into the community alone expressed anxiety about the prospect of being unaccompanied: No I don’t go unless someone comes with me. I’m not too safe, I wouldn’t walk by myself (P15).
Four people were classified as confident explorers. One man pushed himself to remain active, regain strength and resume his pre-stroke activities in spite of a significant visual disability:
I was doing a lot of exercises at home…trying to get mobile…When I came home (from hospital) we were going out for a walk every day. (P5)
Interestingly, the majority of participants reported being told not to cross roads unsupervised when they left hospital, usually by their physiotherapist or doctor. Most complied until advised to do otherwise by a health professional. No person could recall practicing crossing roads while they were in hospital following a stroke.
Catching public transport
This category refers to bus and train travel, including public buses, hospital buses, subsidised community buses and courtesy buses, with or without a walking aid, escorted or alone. Reasons for catching the bus included: to relieve family of driving duties, no longer being allowed to drive, affordability of tickets and proximity of the bus stop to the destination. Only two people talked about catching a train.
By the follow-up interview, nine people were catching buses. Eight people had used buses pre-stroke. Needing to negotiate steep stairs and find a seat quickly were identified by 11 participants as a reason to not use buses, whereas three people were resistant because bus drivers and other passengers did not understand their disabilities.
Interviewer: You’re not using buses, public buses?
P2: No, only the hospital bus. They’ve (public buses) got a step down. They’re used to having disabled persons, the hospital bus.
The hesitant bus user below was concerned about a monthly bus trip with her friends. She felt that she first ‘had to be sure’ she could manage getting on and off the coach without help:
I have to be very, very sure that I can go (on the bus outing). I have to be more confident. The buses are old ones and have steps. Not like the buses that lower down. (P11)
There were within-person differences in confidence for different modes of travel. The person above (P11) was very certain about her abilities when catching a train. She caught trains and public buses alone. However, catching a private coach for a social outing remained an unmet goal at three months follow-up.
I caught the train. I wasn’t scared. I wasn’t scared of the public, I wasn’t scared of… a little gap on the train. [I was] very confident. (P11)
Catching the bus was a preferred mode of travel over walking for one participant. This man was hesitant about walking long distances because of co-morbidities (diabetes and fluctuating blood sugar levels during exercise), but was confident of catching a bus alone:
I don’t worry – when I think of how far [it is to walk] my body says no walk, catch the bus… it is just easier to catch the bus. (P3)
Rules or restrictions were often set by family and therapists. They would not allow participants to walk or travel outdoors on a bus alone. Four people were ‘not allowed’ to participate in certain outdoor trips because their relative or therapist had advised against it:
He wanted to go out more often, but (his) son in law will not allow him to go out. He wanted to catch a train with (his wife,) but he (son in law) won’t allow (it). (Wife of P10)
Below is an example of a person whose outdoor walking was limited because of restrictions from his physiotherapist.
The physiotherapists they told me not to go around on some parts and to be careful not to put myself in danger. (P9)
Australian driving regulations state that people should not drive for at least one month post-stroke, longer if they experience persistent impairments (Austroads Incorporated, 2003). Some people are required to take an on-road driving assessment before returning to driving following a stroke.
Although 16 of 19 participants were drivers pre-stroke, only one had returned to driving by the three month follow-up interview. The other 15 participants hoped to resume driving in the future. Non-drivers managed by using public buses, courtesy buses, taxis, trains and lifts from friends or family. Some participants declined the opportunity to sit a driving test because they wanted that decision to be theirs, rather than being told they could not drive. Driving was the preferred method of travel for all 16 pre-stroke drivers because of the convenience of a private car.
Anxiety often surrounded thoughts of return to driving, with 14 of the 16 drivers feeling hesitant. Some were afraid of failing the on-road test. The cost of the on-road assessment (approximately $300 AUD at the time) was also a disincentive. Participants typically felt unsure about their physical and mental abilities, as the following quote illustrates: I want to make sure I’m 100% before I start driving… At the moment I don’t feel like it (P2).
The one man who resumed driving soon after his first interview had originally expressed a keen desire to drive. He felt confident about resuming driving, and avoided completing an on-road test by asking his general practitioner to approve his fitness to drive.
I was champing at the bit (restless) to get back to driving. It’s quite awful when you don’t have a car… I’ve been driving for a while now…every day. (P1)
There were three key findings from this study. First, a continuum was identified from hesitant to confident explorer for three different community activities. Second, factors that influenced outdoor travel, including their emotional disposition, having meaningful destinations, expectations of recovery and their sphere of influence, could be an enabler or barrier. Third, health professionals and family members were identified as influential gatekeepers over people’s activities. Some of these factors, such as the sphere of influence are modifiable, whereas others are not. Figure 1 combines these concepts.
A new finding was that some people did not cross roads or walk outdoors because of perceived rules set by therapists, general practitioners and family members. The label ‘gatekeepers’ was used because these other people monitored and controlled the activities of people following stroke, consciously or unconsciously. Of particular interest was the gate-keeping by health professionals. Families could also be anxious about safety and set rules about what the person could or could not do.
Professionals need to be aware of the consequences of recommendations made to clients. Several participants took the advice of health professionals quite literally. They did not travel outdoors alone, even when capable of doing so. One problem appeared to be the lack of review; advice given early in a rehabilitation program may be restrictive and counterproductive later. Advice to clients should be individualised, timely and evidence-based. In some cases, it may by unsafe for participants to travel alone. Indeed two people in the sample had a cognitive impairment and needed supervision. All other participants were encouraged to travel or walk outdoors alone and appeared to be doing so in a safe manner, with no falls or negative outcomes reported at three months.
Some family members and friends will be able to adopt an enabling, therapist-like role and supplement formal rehabilitation. Greater family involvement in therapy could help to increase understanding of the person’s experience. However, this new role could place a further burden on family to meet the individually demanding roles of emotional support, carer and therapist.
Walking as a habit
Two types of people were identified, according to self-reported walking frequency: walkers and non-walkers. Walkers had been active pre-stroke. Many had a daily walking habit and walked for leisure. Walkers were more likely to strive to return to their pre-stroke fitness and practice independently of the rehabilitation sessions. Non-walkers reported leading a sedentary life pre-stroke, were unlikely to take up physical activity on their own and rarely initiated walking. At the same time, walking alone was identified as a goal by most participants. Walking has previously been identified as a preferred activity by older people, for leisure and exercise purposes (Dallosso et al., 1988). Findings highlight the importance of identifying pre-stroke walking habits in younger and older people. Therapists can then help interested people who were not regular walkers pre-stroke to adopt this habit.
Anxiety pervaded discussions about return to driving. Many participants were anxious about the cost of the test, and/or the prospect of failing their driving test. They remained anxious despite having access to relevant information and therapists who could potentially assist them. Only one participant resumed driving and felt confident about his decision.
Driving cessation is difficult. Giving up driving can result in depression, decreased community engagement, isolation and safety concerns associated with alternative transport use (Liddle, McKenna & Bartlett, 2006; Lister, 1999). To address these undesirable outcomes, the UQ-DRIVE program was developed by Liddle et al. (2006) at the University of Queensland, Australia to assist older people with driving cessation. The effectiveness of that program is currently being evaluated. While we await results, therapists can use instruments like the Adelaide Driving Self-Efficacy scale, to find out how confident people feel about resuming driving (George, Clark & Crotty, 2007).
The level of knowledge that occupational therapists and others have about return to driving is unclear. For example, in the current study, it was unknown what advice therapists had provided, or how confident they were giving that advice. The process seems to be confusing for professionals. General practitioners and non-driver trained occupational therapists are often unsure what to recommend to people following stroke (McCluskey & Middleton, 2010a).
Environmental and psychological barriers
A number of barriers to outdoor travel were reported, including physical barriers (steps on buses; busy roads), social barriers (lack of company) and psychological barriers (loss of confidence). Similar observations have been made by others (D’Alisa, Baudo, Mauro & Miscio, 2005; Logan, Dyas & Gladman, 2004a; McCluskey & Middleton, 2010a; Pound et al., 1998). Logan et al. (2004a) identified a fear of injury or embarrassment from falling, lack of confidence, inadequate knowledge of transport services, the cost of transport, night time travel and the weather. Pound et al. (1998) identified barriers to leaving the house including steps, no rails, uneven ground and buses that did not stop close to the footpath. Surprisingly little research has focussed on enablers to outdoor travel. In the emerging theory, barriers and enablers to outdoor travel are proposed. An understanding of these factors could enable therapists to identify reasons for people not getting out and strategies that encourage outdoor travel.
Study limitations include the sampling technique and study size. First, a convenience sample was used rather than one derived through purposive sampling. This sampling technique may have decreased the range of responses obtained and factors identified. Therefore, the theory should be considered provisional or emerging.
Second, although the sample is broadly representative of people following stroke who return home and receive rehabilitation, this sample was younger than other cohorts. The median age of stroke survivors in Australia is 79 years (Australian Institute of Health and Welfare, 2006). With a mean age of 68.6 years, people in the current sample were younger, may have been more resilient, have fewer co-morbidities and more likely to return home. Furthermore, all participants were involved in an intervention, which aimed to increase outdoor travel.
Study findings may be transferable and applied to people who can walk following a stroke, but more interviews are needed to reach data saturation. The current sample may be more physically able than the wider stroke population. All participants could walk alone indoors, with or without an aid at the time of discharge, and none used a wheelchair indoors. Findings will not be transferable to non-ambulant individuals People who are not participating in rehabilitation, which targets outdoor travel are likely to have different experiences, as are those with communication problems and indeed, people who have lived at home for many years since their stroke.
Implications for practice and future research
A first implication is that therapists seemed to act as a ‘cue’ or trigger to help get people travel outdoors, thereby enabling participation. Family members seemed less able to promote outdoor travel. Second, additional barriers and enablers to outdoor travel were identified through in-depth interviews. The emerging theory may help therapists to identify otherwise unrecognised barriers to a persons’ rehabilitation and modify their rehabilitation plan accordingly. Finally, this study raises topics for future research. Confirmation of these findings with another cultural group and in another setting would be valuable. A similar study is also warranted with people who have lived in the community for 12 months or longer following stroke. The theory may also be applicable to other conditions and disabilities, such as older people and those recovering from orthopaedic or cardiac conditions.
Study findings suggest that people in the early stages following stroke could be classified on a continuum from confident to hesitant explorer with regard to outdoor travel. An individual’s position along this continuum was influenced by several factors. Pre-stroke walking habits contributed to outdoor travel. Gate-keeping by therapists, general practitioners and family members seemed to limit outdoor travel for some individuals. Findings reflect a sample of people who were ambulant and had received intervention to help improve outdoor travel. Future research could explore the experiences of people with more severe mobility, cognitive and communication problems, and who have lived at home for a longer period post-stroke.
During this study, the second author (AM) held a NHMRC-NICS-HCF Health and Medical Research Foundation Fellowship (2007–2009). The study was also supported by a project grant from the National Stroke Foundation. None of these organisations were involved in or influenced data collection or analysis, writing up of the manuscript or the decision to submit this manuscript.