Forty-eight stroke survivors and sixteen caregivers participated in the study. One hundred and thirty-three hours of observations were completed involving focused observations of 19 stroke survivors and five caregivers across both settings and locations. Observations took place between October 2017 and March 2018. Interviews ranged from 23 minutes to 173 minutes and lasted an average of 66 minutes. Stroke survivor interviewees, 31 in total, were approximately 6-months post-stroke (n = 20, 8 female, mean 75 years old, FAC = 4.6, NEADL = 49, SB VAS = 6) or 9-months post-stroke (n = 11, 5 female, mean 73 years old, FAC = 4.6, NEADL = 47, SB VAS = 7). All interview participants were ambulant whereas observation participants varied in mobility status (FAC scores range from 0-5; Barthel scores range from 7 – 20). See Table 1 for an overview of stroke survivor and caregiver observation individual participant characteristics, and Table 2 for an overview of stroke survivor and caregiver interviewee participant characteristics.
The analysis produced six themes that contribute to an understanding of sedentary behaviours in stroke survivors. The themes are: (1) sedentary behaviour levels and patterns after stroke, (2) the physical and social environment in the stroke service and in the home, (3) standing and movement capability after stroke, (4) emotion and motivation after stroke, (5) caregivers’ influence on, and role in influencing, stroke survivors’ sedentary behaviour, and (6) intervening to reduce sedentary behaviour after stroke. An illustration of how the themes map to the COM-B model is provided in Supplementary File 3. In the anonymised direct quotations which follow, all participants are referred to by pseudonyms.
3.1 Sedentary behaviour levels and patterns after stroke
All stroke survivors indicated that they spent more time sitting and lying down in the months following their stroke than prior to the event. This theme describes levels and patterns of behaviour in the inpatient setting and at home.
3.1.1 Behaviour in the inpatient setting
Observations conducted in both stroke units indicated that inpatient stroke survivors spend most of the day in sedentary behaviours, either lying in bed or sitting in a bedside chair. These extended periods of sedentary behaviour were only interrupted when stroke survivors attended therapy, during washing and dressing or when being taken to or from the toilet or bathrooms by staff, or if taken off the unit to a café or garden by family members. Stroke survivors were most commonly observed sitting or lying down while engaging in no other (cognitive, social etc.) activity. During informal interactions with the researchers, some stroke survivors suggested that they felt this prolonged sitting and lying had a restorative function related to fatigue, whereas others perceived that it lacked purpose and found it boring.
Other sedentary activities inpatient stroke survivors were observed engaging in included reading, using electronic devices, and talking with visitors. Observations indicated that stroke survivors broke up prolonged sedentary behaviour less frequently during the evenings, compared to the morning and afternoon. The most frequently observed non-sedentary activity was sleeping.
3.1.2 Behaviour following return home from the inpatient setting
All interviewees voiced that they engaged in a wider range of activities involving standing and moving upon return home from the inpatient setting. This included self-care, household, and social (within and outside the home) activities:
“Maybe after I go for a walk… having half-an-hour reading and [then] go upstairs and do my ironing you know… then I make a meal and settle down. But that’s if I’m here, we like to go out for afternoon tea and that sort of thing, to the garden centre” (Aria, 9-months post-stroke, 84 years, FAC = 4)
Stroke survivors discussed relatively defined pre-stroke patterns of activity and sedentary behaviour across the course of the day that tended to endure once returning home post-stroke. The most typical daily pattern articulated by stroke survivors was sedentary behaviour being broken up less frequently as the day progressed, with evenings often consisting of uninterrupted sitting activities. However, interviewees indicated that they were more sedentary than they were pre-stroke, and some were unable to engage in activities they enjoyed pre-stroke, such as driving, holidays, gardening and housework.
3.2 The physical and social environment in the stroke service and in the home
The physical environment contributed to high levels of sedentary behaviour in the inpatient setting. On the mixed acute-rehabilitation stroke unit, many patients were observed to be connected to medical equipment that prevented them from standing and moving. In both services, small spaces, further hindered by the presence/storage of equipment in patient bays and corridors, made it more difficult for stroke survivors to move around the stroke unit.
Stroke survivor interviewees indicated that they were reluctant to ask hospital staff to supervise or assist activities involving standing and movement because they perceived staff to be under time pressures. When asked why he thought he spent so much time sitting down when he was in hospital, Oliver responded that: “There weren’t enough staff around and I was immobile anyway with my leg” (Oliver, 9-months post-stroke, 63 years, FAC = 5).
Some stroke survivor and caregiver interviewees believed that stroke survivors were more receptive to advice about movement provided by stroke service staff than by family and friends:
“People do listen to the medical people… I think that incentivises people...the voice of authority” (Maria, 9-months post-stroke, 59 years, FAC = 5)
The observational data showed that stroke survivors’ differing home environments contributed to individual differences in sedentary behaviour after stroke. The presence of environmental modifications, such as safety handles and stair lifts provided opportunities to move independently within and outside the home. Stroke survivors who lived in accommodation that they did not own were less able to make environmental adaptions, and appropriate organisational input was often required to gain permissions to do so.
3.3 Standing and movement capability after stroke
Observational data revealed wide variation in capability to stand and move between stroke survivors depending on the severity and presentation of post-stroke impairment. Support required included physical assistance or supervision, or the use of walking aids, wheelchairs or hoists. Interviewees described physical impairments that continued to impact on their lives:
”[I’m] not quite as able since I’ve had the stroke but things are getting better all the time, sort of like a week by a week I can notice that yes I can do something better than I could do before” (Alexander, 6-months post-stroke, 82 years, FAC = 4)
At six- and nine-months post-stroke the impairments most commonly linked to reduced ability to stand and ambulate were impaired balance and co-ordination, coupled with (hemi)paresis:
“I just feel a bit unsteady if I turn quickly, and that’s probably because my left leg isn’t as strong as it used to be” (Jenson, 9-months post-stroke, 71 years, FAC = 5)
Post-stroke fatigue was also cited as a barrier to reducing and breaking up sedentary behaviour for some stroke survivors. Some stroke survivors reported feeling frustrated that fatigue was ‘forcing’ them to sit for longer than they desired:
“If you get fatigue after a stroke you cannot over[come it]… like I love gardening, I still do, I can’t do it, I try but after sort of half-an-hour, three-quarters I’m totalled” (Imogen, 6-months post-stroke, 72 years, FAC = 4)
“It’s frustrating for me not to be able to get off my backside and do something” (Jayden, 9-months post-stroke, 74 years, FAC = 5)
Other interviewees indicated balancing activities involving standing and movement with sitting to manage fatigue, and did not experience guilt when resting following engagement in an activity:
“So, she said ‘once you get up and wash and everything, half an hour rest. If then you make the beds, half an hour rest' … so actually it’s quite nice for me, it’s a bit of a new thing… where I can sit and I think, I don’t feel guilty” (Olivia, 6-months post-stroke, 71 years, FAC = 5)
Upper-limb impairments limited opportunities for reducing sedentary behaviour, as stroke survivors reported being less able to engage in functional activities:
“I can use me hand as a hand but I can’t use the fingers. I did the cooking, the cleaning, the washing, the ironing [before the stroke], I can’t do it now” (Imogen, 6-months post-stroke, 72 years, FAC = 4)
The stroke event and associated impairments also reduced stroke survivors’ general confidence and perception of their capability to stand and move, particularly in relation to fear of falling, which was often linked to the environment (e.g. uneven ground, adverse weather conditions):
“It were [sic] windy and I felt as though I could get blown over here. Well that would never have bothered me in the past” (Thomas, 9-months post-stroke, 60 years, FAC = 3)
Most interviewees indicated that pre-existing health issues such as arthritis, made it difficult for them to stand and move both prior to, and following, their stroke:
“I mean the hip tends to make walking a) uncertain and b) slightly painful…But that’s been, that’s not since the stroke, that’s been for two or three years now” (Henry, 6-months post-stroke, 81 years, FAC = 4)
3.4 Emotions and motivation after stroke
Some stroke survivors expressed that negative emotions linked to stroke-related impairments and the perceptions of others prevented them from leaving the home and engaging in previously valued activities:
“I hated every minute of it, ‘Please take me home’. But that was because I was thinking [of] how I looked to other people” (Charlotte, 9-months post-stroke, 77 years, FAC = 5)
Stroke survivors varied in their motivation to engage in rehabilitation activities. Some expressed a desire to return to valued and independent activities they engaged in pre-stroke:
“I still do those [therapy exercises] twice a day. I just want to get back 100%, if I can, you know? As I say, my main ambition is in August [to] cut my own hedges” (Harry, 6-months post-stroke, 81 years, FAC = 5)
Other stroke survivors were less motivated to engage in rehabilitation activities, saying things like they: “can’t be bothered” (Zara, 6-months post-stroke).
Stroke survivors indicated that they valued activities including watching TV, reading, crafts, and other cognitive activities, which usually occur in a seated posture. Interviewees were more concerned with whether they were occupied than if they were being sedentary or active, and interviewees’ narratives indicated that sedentary behaviours involving cognitive engagement, such as reading, were valued over ‘passive’ sedentary behaviours:
“I think maybe half of the sedentary things is good providing you’re keeping your brain going and you’re not sitting there just thinking of nothing” (Maria, 9-months post-stroke, 59 years, FAC = 5)
Some interviewees said the stroke motivated them to make changes to their health behaviour, usually to minimise the risk of stroke recurrence:
“I wasn’t one for going to the gym, smoked 40 a day, haven’t smoked since the day I had the stroke, and that’s it” (Albert, 6-months post-stroke, 42 years, FAC = 5)
Other interviewees indicated that the stroke did not prompt them to consider lifestyle changes. Reasons cited included disillusionment with exhibiting a ‘healthy lifestyle’, especially in stroke survivors who perceived they had a ‘healthy lifestyle’ pre-stroke, and a perception that changes were not required as they had already modified their lifestyle to manage other conditions:
“That’s the thing that’s bugging her really as well, that all her life… she’s eaten well, she doesn’t drink, she doesn’t smoke and then she had a stroke” (James, caregiver, 74 years).
“I’m careful with the sugar because me [sic] sister… she went blind with diabetes… if you don’t watch it, yeah, you’re going to suffer the effects, aren’t you?” (Edward, 6-months post-stroke, 80 years, FAC = 5)
3.5 Caregivers’ influence on, and role in influencing, stroke survivors’ sedentary behaviour
The observational and interview data highlighted current caregiver behaviour that influences stroke survivors’ sedentary behaviour, and barriers and facilitators related to supporting the stroke survivor to reduce sedentary behaviour, connected to the caregiver role and circumstances, and the perceived influence on the stroke survivor and their relationship with the stroke survivor.
3.5.1 Current caregiver support behaviour
Caregiver interviewees provided examples of things they currently do to facilitate stroke survivors spending less time sitting. For example, some caregivers said they encouraged, supervised, or physically supported the stroke survivor to engage in activities involving standing and movement, including personal care activities and household tasks:
“It’s important I’m handy while she’s dealing with the kettle and while she’s pouring the water in the cups and that” (Joseph, caregiver, 83 years)
Caregivers also reported engaging in joint activities involving standing and moving with the stroke survivor, for example, walking, attending social groups, and visiting friends:
“He cut back on his workload which I'm glad, so I'm able to go out and about” (Heidi, 6-months post-stroke, 82 years) … “We've done more of it since she had the stroke” (Stanley, caregiver)
3.5.2 The caregiver ‘role’, responsibilities and circumstances
Some caregiver interviewees spoke of an increased sense of responsibility for the stroke survivor following their stroke, linked to their post-stroke impairments, which generated a lot of additional ‘work’, including supervising or helping with daily tasks. Whilst some caregivers said they had enough time to dedicate to supporting the stroke survivor, others had to balance their caregiver role with various other responsibilities including employment and other caring roles:
“But then some people, they can’t do it because they’re too busy, they’ve got, you know, other things to do… most of the day I’m not here because I’m at work, you see” (Isabelle, caregiver, 52 years)
Some caregivers spoke of a natural process of withdrawing from ‘caring’ activities to facilitate independence in the stroke survivor, alongside improvements in the stroke survivor’s capabilities:
“There are now quite a few times when I sort of say “tell me when you want help”, so I’ll let him persevere a little bit more” (Freya, caregiver, 60 years)
However, some caregivers expressed a feeling of apprehension related to withdrawing from the caring role, for example, Freya said: “letting go is quite hard because I want him to be safe” (Caregiver, 60 years). A reluctance to, or uncertainty about when to, withdraw from the caregiver role could limit stroke survivors’ opportunities, and capability, to reduce sedentary behaviour.
3.5.3 Perceived consequences of supporting sedentary behaviour reduction
Some caregivers of stroke survivors who reported significant physical post-stroke impairments were reluctant to encourage the stroke survivor to reduce sedentary behaviour as they thought additional standing and movement may cause the stroke survivor unnecessary pain or discomfort:
“Until her leg and her arm and her balance improve… to be honest it would be a waste of time because it would be inflicting pain on her, as things stand” (James, caregiver, 74 years)
Caregivers of stroke survivors who were not capable of, or motivated to, reduce sedentary behaviour were disinclined to encourage the stroke survivor to reduce sedentary behaviour, as they felt that the stroke survivor would not act on the encouragement:
“I tell him, look, move around, do the squats at the kettle… I don't know how many times I've told him that, but it doesn't seem to register, or he doesn't want it to register… it’s about how receptive someone is going to be to advice” (Scarlett, caregiver, 53 years)
Caregivers did not want to negatively affect their relationship with the stroke survivor, for example, by being perceived as ‘nagging’:
“I just think ‘oh I don’t want to be this nagging sort of person’… I don’t want the time that I’ve got with Thomas to be spent trying to make him do things he doesn’t want to do, I want the time just to be happy together” (Freya, caregiver, 60 years)
3.6 Intervening to reduce sedentary behaviour after stroke
The theme below describes whether and why stroke survivors would participate in an intervention, and their preferences related to timing, content and delivery of an intervention to reduce sedentary behaviour after stroke.
3.6.1 Views on taking part in a post-stroke intervention to reduce sedentary behaviour
Approximately half of the stroke survivors interviewed expressed an interest in taking part in an intervention. Reasons for wanting or not wanting to participate align with findings contained in the earlier themes, such as a perceived incapability to stand more, and a perception that standing more may facilitate recovery.
Receptiveness to participation also varied depending on stroke survivors’ awareness of and beliefs about the relationship between sedentary behaviour and health. A minority of interviewees mentioned physical health factors, including “[increased] blood pressure” (Scarlett, caregiver, 53 years), and “[reduced] circulation” (Charlie, 9-months post-stroke, 55 years, FAC = 4) when asked about how they thought too much sitting might affect their health. Some interviewees said that sitting - without being otherwise engaged - sometimes led them to ruminate about the impact of the stroke, which had a knock-on, negative impact on their mood:
“You can become depressed by just sitting, if you’re on your own… go and do something, you know” (Edward, 6-months post-stroke, 80 years, FAC = 5)
Some interviewees said they were unaware of how sitting affected health and other (typically older) interviewees recognised - but did not value - a relationship between sitting and health:
“I wouldn't anticipate the [health] benefits [of reducing sedentary behaviour] at all… absolute poo… I just continue as I feel” (William, 9-months post-stroke, 88 years, FAC = 5)
Stroke survivors who were aware of physical and / or mental health risks of sedentary behaviour, and who placed value on adjusting their behaviour to improve their health, were more likely to voice a desire to reduce sedentary behaviour after stroke.
3.6.2 When to intervene to reduce sedentary behaviour after stroke: timing considerations
Interviewees reported mixed views relating to timing preferences for a post-stroke sedentary behaviour reduction intervention. Approximately half of the interviewees thought that an intervention should commence almost immediately post-stroke, in the hospital setting, for reasons including filling the time and a perception that it would use useful to frame the intervention as contributing to stroke rehabilitation:
“You’ve nothing else to do in hospital” (Aria, 9-months post-stroke, 84 years, FAC = 4)
“It’s as well to introduce it… at the time that they are recovering from the stroke, because that actually helps you to sell it” (Henry, 6-months post-stroke, 81 years, FAC = 4)
However, other interviewees indicated that the immediate post-stroke period can be “overwhelming” (Frankie, 6-months post-stroke, 92 years, FAC = 3), and that stroke survivors might be able to engage with an intervention once they have returned home and have “come to terms with it [the stroke]” (Maria, 9-months post-stroke, 59 years, FAC = 5) and are physically able to stand.
3.6.3 How to support sedentary behaviour reduction: content and delivery preferences
When asked about preferences for a sedentary behaviour reduction intervention, a common suggestion was a group exercise class, partly due to the social nature of such activities:
“The contact that you make with other people is one of the things that actually persuades you to be more actively involved I think… ‘If it means I’ll meet you again mate, I’ll come’, sort of thing” (Henry, 6-months post-stroke, 81 years, FAC = 4)
Interviewees also felt that information provision around the health consequences of sedentary behaviour, and of ways to integrate more standing and movement into the day, was required:
“Information, because that’s encouragement, encouraging not to rest for too long. Maybe some suggestions of useful exercises” (Gracie, 6-months post-stroke, 77 years, FAC = 5)
Interviewees felt that suggestions of purposeful activities, for example “make[ing] a cup of tea” (Aria, 9-months post-stroke, 84 years, FAC = 4) or “discover[ing] some sort of craft… something you enjoy doing” (Anna, 9-months post-stroke, 79 years) would be most acceptable to them as they were reluctant to engage in activities that were not meaningful.
Stroke survivors indicated that utilising reminders to stand, e.g. “an alarm of some sort that makes you think, ‘oh I’ve been sitting too long’” (Maria, 9-months post-stroke, 59 years, FAC = 5) would be useful for prompting standing, particularly for those with post-stroke memory impairments.
When caregivers were asked about how they could encourage or support the stroke survivor to sit less, one caregiver suggested prompting the stroke survivor to stand at regular intervals:
“If you sent a text every half hour, ‘what you doing, are you up’, you know, stuff like that” (Isabelle, caregiver, 52 years)
However, most caregiver interviewees were unable to identify ways they could support the stroke survivor to stand and move more:
“I don’t know really [pause]. I can’t really think of anything” (Elizabeth, caregiver, 75 years)
There was a recognition that an intervention would need to account for differences in stroke survivors’ capability and preferences, as “everybody’s different… there’s no two stroke people the same” (Albert, 6-months post-stroke, 42 years, FAC = 5).