A total of 166 questionnaires were sent out to eligible stroke survivors from the established databases. Questionnaires were returned by 95 (57.2%) stroke survivors. Twenty-eight stroke survivors were purposively sampled to the study from November 2013 to April 2014. Their 11 caregivers (eight wives and three husbands) also participated. Thirteen of the stroke survivors were between 9 and 12 months post stroke and 15 were between 32 and 47 months post stroke. Interviews lasted between 43 and 105 minutes. All stroke survivors spoke English. Eleven caregivers took part in the interviews; in all cases, interviews were conducted together. The caregivers’ contributions to the interviews were considered in the analysis process. However, their input was largely confirmatory about the caregivers’ perceptions of the stroke survivors’ experiences, rather than a rich insight into their own experiences. For this reason, the needs remain focused on the stroke survivor or any shared needs rather than caregiver-specific needs. outlines the characteristics of the stroke survivors included in the study sample.
Identified needs
Stroke survivors experienced 13 needs related to different aspects of their experience. For the purpose of this study, needs were defined as something meaningful for stroke survivors and their caregivers in terms of the impact on ‘doing of everyday life’ and significance for who they are as a person (sense of self).
The 13 needs identified were (1) managing and coping with a major life event, (2) gaining control, (3) managing emotions, (4) doing everyday tasks around the house, (5) working towards physical and functional improvement, (6) managing hidden consequences of stroke, (7) obtaining usable information, (8) sustaining flexible support networks, (9) engaging in meaningful activity, (10) overcoming financial concerns, (11) maintaining relationships, (12) reconstruction of identity and (13) managing beyond the home.
Some differences were recognised between those who were 9–12 months post stroke and those who were > 24 months post stroke. Feelings of hope, in terms of the need to work towards physical functioning, were more common amongst those who were 9–12 months post stroke. At this time point, stroke survivors more often talked about establishing a cause for their stroke as part of understanding and making sense of their situation. This was attached to the need to gain control.
Alternatively, more of those who were at least 24 months post stroke talked about the process of reaching acceptance. This was important for addressing many of the needs, including doing everyday tasks around their house, managing and coping with the major life event, managing the hidden consequences of stroke, reconstruction of identity and maintaining relationships. Aside from the slight differences at each time point post stroke, much of their talk around needs and managing these needs remained similar across the two time points.
This section outlines each of the 13 needs and the barriers to and facilitators of addressing needs that are documented in .
Managing and coping with a major life event
The stroke had affected the survivors and their caregivers to some extent. Some were more affected initially, but quickly reached a point where they were continuing as they did previously, for example Jane and David. Others took longer to cope and manage with the effects of the stroke across different aspects of their lives, for example Carla. For the majority of the stroke survivors, the stroke was viewed as unexpected and shocking and caused some level of disruption to their own, and their family’s, lives, even temporarily. Managing and coping thereafter is a longer-term issue; therefore, stroke survivors and their caregivers needed to be able to find ways of managing and coping in terms of moving forward from this major life event.
Stroke survivors and their caregivers adopted many beneficial strategies (‘facilitators’) for coping with the ‘major life event’. Making comparisons with others was an interesting strategy as this can have both negative and positive consequences for stroke survivors and their caregivers. For some, making these comparisons enabled some realisation that they are lucky to be alive or that their difficulties are not as bad as they could be. This left them feeling fortunate, despite experiencing a major life event:
I was so delighted to be OK when I’d heard of people who are, you know, disabled or speech problems and all sorts of things that you hear after and I was so grateful that I was very happy, actually.
Julia
In contrast, some stroke survivors felt that they were not doing as well as they could be when they compared themselves with others. Marilyn felt this way when she compared herself to someone who had experienced a milder stroke:
Yeah, and I said to [husband] ‘oh, she’s walking already’ and he said ‘yeah, but her stroke weren’t as serious as yours’.
Marilyn
Having a sense of humour and a positive attitude were important facilitators for coping with life after stroke. Being able to achieve a positive outlook was associated with re-evaluating their lives. After her stroke, Evelyn became depressed, but through re-evaluating her situation and realising she had something to live for, she coped better. There was also a sense that a stroke survivor’s outlook was influenced by their personality prior to the stroke. For example, Denise described herself as determined and expressed that she is not one for ‘moping around’. She acknowledged that another stroke could happen, yet she is willing to take a risk and actively continue with her life rather than passively sitting at home:
Interviewer:
So what do you think’s helped you do so well since the stroke?
Denise:
I don’t know really, probably because I’m just determined to get on with things, I’m not one for sitting around moping so . . . And I’m sure I could have gone other way if, you know, I could have been getting up and going out and doing things, then I could have had another, I’m not doubting that but I’d still rather that chance and get on with life than sit around waiting for it.
Not dwelling on the stroke was another strategy adopted by some of those who were 9–12 months post stroke, for example Timmy, Denise, Jane and Evelyn. Jane did not feel the need to look back in terms of the stroke because she knew how lucky she had been. By taking this approach, these stroke survivors saw it as a way of moving forward and not focusing too much on the event itself. Although this is a positive approach to managing for some of the stroke survivors, others struggled to project too far into the future, especially when their circumstances were more unpredictable. This unpredictability occurred among those who were more impaired by the stroke and faced uncertainty in the extent of their recovery. Taking each day as it comes was a way of managing this uncertainty to some extent. Paddy has experienced three strokes since 2007; since having these, he no longer plans or thinks about the future.
Acceptance was another strategy that stroke survivors and their caregivers employed to cope with the stroke and the changes to their lives. Those who were at least 24 months post stroke talked about this more during the interviews than those who were 9–12 months post stroke. Acceptance was discussed in the context of different aspects of their recovery and in terms of coping overall with the major life event. Cedric and his wife recognised the importance of acceptance and took the view that this is something you have to ‘learn’ to do as part of a process over time:
Oh you’ve to accept it, you’ve to have a positive outlook, and you have to learn to accept it.
Cedric’s wife
Being unable to reach acceptance can be a barrier to managing and coping. Carla was 3 years post stroke at the time of the interview, but she openly stated ‘I still haven’t accepted it’. She made a distinction between realisation and acceptance:
Interviewer:
And when do you think you started to sort of realise things would be different?
Carla:
When did I realise or when did I accept?
Interviewer:
Yeah, well whichever sort of suits?
Carla:
I realised just how little I, not how little, no, how different it was all, what, how different my life is going to be when I didn’t succeed at going back to work. Because work’s a great healer, int it? You go to work you can forget it, can’t you? But no.
Failing to successfully return to work allowed her to realise that her life was going to be different, but she still struggled to accept it.
Gaining control
During the time that stroke survivors spend in hospital, control is in the hands of medical professionals, and stroke survivors become passive agents of information and support. Caregivers have not always fully taken on their roles and much of the responsibility for the stroke survivor is out of their hands. The transition from hospital to home can lead to a loss of control for both the stroke survivor and their caregivers (or other family members) through having to manage the uncertainties that living with life after stroke brings. The key areas discussed among the stroke survivors and their caregivers around control included the need to feel able to manage and the need to address uncertainties (e.g. fear of the stroke happening again and understanding why the stroke happened).
With regards to managing, there was often a mismatch between stroke survivors and caregivers in the transitional period from hospital to home. For example, stroke survivor Bob wanted control by coming home from hospital, but his wife felt that this transition would lead to a loss of control. This is when she would fully embark on her caregiving role and she was unprepared at this stage:
Again, I suppose it’s the control situation, isn’t it, of whichever side you’re of, you wanted to be in control in coming home and I wanted somebody else to be in control because I didn’t feel in control.
Bob’s wife
Both stroke survivors and caregivers needed to feel a sense of control; however, there were differences in what allowed them to feel in control. It was common for both caregivers and stroke survivors to feel abandoned and dismissed once they left hospital because of the lack of support. Marilyn’s husband would have liked someone to visit following her stroke to provide reassurance about managing initially:
You’re guessing a bit on what you’re doing, whereas you feel you need some reassurance to, for somebody to either say ‘no, don’t do that’ or ‘no, that’s fine, you keep doing that’, isn’t it?
Marilyn’s husband
Seeking and building support networks helped some of the caregivers and stroke survivors to manage once the formal support had diminished. Engaging with this support helped them to cope and feel more in control. Charlie’s wife sought informal support from their daughter when she struggled with her situation:
I get very stressed, I get very upset, I get very emotional, my daughter gets it all [laughs].
Charlie’s wife
The lack of control experienced by stroke survivors and their caregivers was also driven by the possibility of another stroke. Those who were 9–12 months post stroke still expressed fears about another stroke:
Interviewer:
Yeah, she sounds nice. So do you worry about having another stroke?
Evelyn:
Yeah, I do. What causes strokes?
However, this expression of fear was less common among those who were > 24 months post stroke. The stroke survivors were often unable to gain an accurate prognosis about the likelihood of re-occurrence, which added to their uncertainties. To attempt to gain control over their unpredictable situations (particularly amongst those who were 9–12 months post stroke), stroke survivors established their own cause to the stroke. Some looked to external events to explain why it happened and others considered the possibility of lifestyle choices. When possible, some of the stroke survivors actively changed their health behaviours. For example, Evelyn consciously cut down her drinking following the stroke in an attempt to reduce the chances of this happening again.
Managing emotions
The degree of emotional impact for the stroke survivors and their caregivers varied greatly. Some were really struggling, whereas others felt that the stroke had left them with no emotional impacts at all. Some of the emotions felt by the stroke survivors included shock, fear, anger, worry, anxiety, stress, depression and guilt. Some of the caregivers also experienced many of these emotions, particularly stress and strain as a result of taking on their new role.
A distinction can be made between emotional responses to the actual event and emotional responses to living with and managing the impairments and impacts of the stroke. There was a need to be able to find ways of managing, as, for many, these emotional responses were ongoing and still apparent up to 3 years post stroke. Examples of the emotions experienced by stroke survivors and their caregivers are discussed in the following distinct categories, in addition to the barriers to and facilitators of addressing these.
Initial emotional responses to the stroke
As documented in the previous theme about gaining control, fear and worries about re-occurrence of stroke were common and led to stroke survivors establishing their own cause of the stroke.
Depression was also felt by some stroke survivors. Cedric experienced this in the initial period post stroke. He described being close to suicide until he got antidepressants, which his wife said gave him a ‘lift’. In many cases, it is difficult to distinguish between depression caused by the stroke and depression as a response to the stroke. At the time of the interview, he was around 3 years post stroke, but he has continued to take antidepressants; these, alongside his positive attitude, allowed him to overcome the depression.
Emotional responses to living with and managing the impairments and impacts of the stroke
Living with and managing the consequences of the stroke evoked stress among some of the stroke survivors. Carla, for example, has become more tired since her stroke and often has bad days, meaning she is vulnerable to becoming more stressed. Seeing themselves as an agent helped the management of stress. Carla learned to acknowledge that, on a bad day, she needs to employ strategies to manage her stress levels. For example, she avoided picking up the telephone if she felt that she would become stressed. It is important for stroke survivors to be able to be aware of their emotional state to employ such strategies:
I mean, if I’m having a bad day or I’m tired and I know I, if the phone rings I just don’t answer it. So I do keep myself out of situations that I could get stressed in, so yeah I suppose in a way I have started to do that, yeah.
Carla
Mavis provides an example of the ‘everydayness of managing’ in the context of her relationship with her husband. She started to take back some of the jobs from her husband, which has facilitated a reduction in her feeling sorry for herself. This was beneficial for him as he suffered with depression and became exhausted by the burden of taking on extra duties alongside work.
Caregivers also experienced negative emotions including depression and feelings of stress, as a result of taking on their new roles. To cope with the strain, caregivers often devised strategies. For example, Arnie’s wife ‘takes time out’ by purposefully getting up early before preparing everything for him:
Yeah. I’m up at the crack of dawn, I mean this morning I was up at 20 past four, I like to get, that’s my time of day with meself and I have me coffee and me fag and I prepare everything.
Arnie’s wife
Many caregivers and stroke survivors lacked emotional support, which made managing emotions more difficult. When possible, some carers built their own informal support networks to cope with some of the strain attached to caring. They also recognised useful avenues of formal support (e.g. counselling); however, this was not freely available.
Doing everyday tasks around the house
Many stroke survivors (e.g. Paddy and Gordon) spent more time in their homes than they did before their stroke, as a result of being physically impaired or becoming resigned to this way of living. It was common for stroke survivors to be motivated by the need to function to a point where they could carry out purposeful tasks, for example making food or getting dressed or washed. For some ‘house-proud’ individuals, being able to carry out tasks was important for maintaining a well-kept home environment. For others, this was important as it formed part of their daily routines, which often centred on home-based activities.
Building a support network was important in cases where individuals were unable to carry out household tasks independently (e.g. cooking, vacuuming, washing). Timmy, for example, had support from his daughter when he first had his stroke as a way of coping with the demands of running his home. This was appropriate for him initially and eventually he was able to manage on his own, but just did things at a steadier pace:
Interviewer:
So can you remember what you were doing on a typical day when you first got home from hospital?
Timmy:
Well me daughter stopped with me for a few days to make sure I could do things, and I was doing things gradually. Well, like I said, I had them, well ready meals just you put in the microwave, so I just had them to do, you see, but coming from the oven on this side onto the breakfast was enough.
Building a sense of togetherness was also important for some of the stroke survivors and caregivers. For example, stroke survivor Lisa and her partner worked together in managing the home environment since she had become physically disabled by the stroke:
. . . So I do the cleaning up and stuff like that, anything that needs polishing . . . or washing floors down, I do all that, then Lisa will do like surfaces that can be done while you’re stood, Lisa will do those, so yeah, yeah Lisa does what she can and then yeah I just do the other stuff.
Lisa’s husband
Encouragement from a partner was also useful for some of the stroke survivors as they managed tasks around the home. Jimmy’s wife let him try tasks before stepping in to support him. Confidence was also influential in whether or not some stroke survivors could carry out everyday tasks around the house. Cathy did cooking in hospital before she was allowed home. She perceived this as an exam that gave her the confidence to feel prepared for her return home. Repeatedly carrying out tasks without assistance increased her confidence:
Interviewer:
Was there certain things you did to prepare or were you just ready . . .?
Cathy:
I said, ‘once I’ve passed those exams in hospital, I’ll be alright’, you know and then they put me in a room, quite a big room that was carpeted for like home-from-home, so you’re on your own and you have to do everything yourself, so when I’d done that for about 4 weeks they thought, ‘oh she must be OK’.
Some stroke survivors talked about acceptance in the context of knowing that jobs around the house take longer and they commonly managed daily tasks by pacing or creatively problem-solving. It was also common among the stroke survivors to start to see themselves as agents in their adjustment and recovery. This involved taking some responsibility for their actions and recovery process. For example, Paddy purposefully uses his weak arm in tasks of daily living (e.g. shaving) to be able to manage day to day and facilitate improvements.
Caregivers being overprotective was sometimes a barrier to stroke survivors carrying out tasks around the home. Caregivers were inclined to be most protective in ‘risky’ areas around the home, for example the kitchen and the bathroom. These were places they associated with greater risks of falls or injuries.
Working towards physical/functional improvement
Many stroke survivors in the sample were physically affected by the stroke to some extent. Some (e.g. Cathy) were unable to walk without a walking aid. Others experienced numbness in their limbs or loss of function/co-ordination (e.g. Robert). Some had no physical impairment at all (e.g. Jane). Stroke survivors who had been affected physically by the stroke demonstrated a need to continue improving once the formal rehabilitation ended. These improvements were often recognised in the context of their abilities to carry out purposeful tasks or meaningful activities and were important for gaining some normality.
A number of facilitators of improvement were identified among the stroke survivors. Creative problem-solving helped enable physical functioning, despite physical difficulties. Marilyn and her husband had an exercise bike that she was unable to use using conventional methods, but her husband found a beneficial way for her to adjust her technique, so she could do her exercises:
Well, because what we do is, we turn it the other way round, ’cause Marilyn can’t sit on it, so I turn it with the handlebars facing her and then she can pedal it sat in her chair the other way round.
Marilyn’s husband
Some stroke survivors also talked about the encouragement they gained from significant others/partners/friends/peers. Some caregivers suggested exercises for the stroke survivors, and prompted movement either when formal therapy ended or when this was never provided:
My husband’s very good, like I said, he thought of the ball idea and he’d say to me, ‘lift your leg, lift your leg’, every so often, ‘lift your leg, keep doing that’, you know, and ‘move your foot, bend your foot like that and that, push it up and down’ so many times a day . . .
Mavis
Among those at 9–12 months post stroke, hope was important, particularly when improvements were uncertain:
Oh, I hope so, yeah. I hope my legs will get working better, that’s the only thing to go now.
Cathy
It was not as common for those who were at least 24 months post stroke to remain hopeful because they had managed for longer and come to terms with the extent of improvement in their recovery. These individuals may have reached a new sense of normal at this stage with regards to their physical functioning.
Motivation was an important facilitator for physical improvements. Those who were highly motivated recognised improvements and emphasised the importance of continued improvement be able to carry out meaningful tasks. On the other hand, difficulties recognising improvements were a barrier to continuing to work towards improvements. If stroke survivors failed to recognise improvements, they became disheartened and lacked motivation. For example, Marilyn could not see that she had improved, despite her husband telling her. She needed reassurance from a professional to be able to see that she was doing ‘alright’:
I’m alright once I went to physio[therapy] and they say ‘yes you are’, you know, ‘you’re doing alright’, if they say I was doing alright, I mean, I felt totally different then about it all.
Marilyn
Unfortunately, the input Marilyn received from the physiotherapy team ended, which made this situation more difficult, as her husband could do little to persuade her that she was improving. This is closely linked to another barrier: the perceived lack of physical rehabilitation support. Some stroke survivors thought that they could have benefited from more input from physiotherapists to facilitate a better physical recovery.
Managing hidden consequences of stroke
Many stroke survivors experienced consequences of the stroke that could be considered more ‘hidden’, for example difficulties with concentration and processing of information, memory impairments and mood swings. These were things that were often hidden from caregivers, the public and health professionals. They were also sometimes hidden from the stroke survivors if they were unable to recognise changes in themselves, for example a change in temperament. Stroke survivors needed to find ways to manage these hidden consequences.
Creative problem-solving facilitated the management of hidden consequences. For example, Denise found it useful to write things down to cope with the demands of her job at the opticians. By using this strategy, she did not feel that her memory loss interfered with her working duties:
Interviewer:
So it doesn’t interfere with anything at work, like, it’s not a problem or anything if you don’t remember something?
Denise:
No, because I have a little tray and I write things down and put notes in me little tray.
Acceptance was important for coming to terms with the longer-term consequences of stroke, such as difficulties processing information, and the resultant impacts that these can have on their lives. Driving is an example of an activity that many stroke survivors struggled with as a result of both physical and cognitive impairments. Carla experienced ‘hidden’ consequences, for example problems with spatial awareness and processing of information, that contributed to her decision to stop driving. Her doctor helped her to realise that she must be truthful and face her circumstances following the stroke. She accepted that she could not deal with the physical or mental side of driving, although she still misses this aspect of her pre-stroke life.
Roger also experienced difficulties with his ability to process information. Building a support network was a way in which he and other stroke survivors have managed this problem. Rogers’s wife wrote instructions for him for when he is using the printer. This worked to some extent, but he often put the instruction card away, meaning his wife had to prompt him to get this out:
I’ve written a little notice by the printer, telling him which order to do everything, but he puts the card away. [Laughs] I said if I write it out I’ll know which way to do it but it’s alright, when we need I say, ‘shall we get the card out?’, you know.
Roger’s wife
Although there are positive ways in which some of the stroke survivors have managed, they also faced barriers to managing at times, one of which was difficulty recognising changes as a result of the stroke. Roger has also had impaired concentration since the stroke, yet he does not recognise this. He and his wife experience conflict around his driving abilities, as he thinks that, if he was physically fine, he would be able to drive. His wife has noticed his lack of concentration, yet this is hidden from him. This makes things difficult because he is unrealistic about what he can still do:
Interviewer:
Mm, so for you it’s all about getting your feet working?
Roger:
Feet, yes. I mean if a car was the opposite way round I could drive it, I’m sure I could.
Roger’s wife:
It’s the concentration though Roger, you don’t see things quite the same way.
Roger:
Well, you and I disagree on this one.
Experiencing a lack of control over difficulties such as mood swings and irritability can also serve as a barrier to managing these issues. For example, Carla experienced these problems for some time following her stroke. She often became very irritable but felt that she could not stop herself. Over time, she is more aware of these difficulties and can control these changes in mood more easily than she did initially. She can keep her emotions in check, but it doesn’t happen as much as it used to. This is something she talked about as a past behaviour and on reflection described this as ‘horrid.’
Stigma was also problematic in managing the hidden consequences of stroke. Lizzy experienced ‘public stigma’ as she found that people struggle to see that she is ill and associated her stammer from the stroke with being drunk:
Well it’s this problem that people can’t see that you’re ill, you know, they don’t realise that, it’s a bit like being deaf, they can’t see you’re deaf, they can’t see your speech is trouble, so they don’t know whether you’re, whether you’ve got a stammer or whether you’re drunk!
Lizzy
When she is out in public, she prefers that people know what her problems are, so that they cannot make these assumptions.
Obtaining usable information
There was a general sense of negativity attached to the timing and content of the information that was given to stroke survivors and their caregivers in hospital. Despite this, stroke survivors and caregivers expressed a need to obtain usable information. The extent of usability was dependent on different circumstances, preferences and needs. Some of the stroke survivors expressed a preference for more specific information to meet needs such as managing incontinence and making lifestyle and dietary changes. Some also wanted to be more informed about what to expect following the stroke.
An example of a common barrier to finding the information usable initially was ‘information overload’. Some of the stroke survivors felt that they had been bombarded with information to the point where they failed to look at it:
Oh yeah, you get all sorts of information, leaflets you know, but you don’t tend to take it all in because you get that much of it, you know.
Malcolm
Others found the information unsuitable because it was specific, too general or too obvious.
Timing of information was also problematic for some stroke survivors and their caregivers. Lisa and her husband felt that the timing of information from the speech and language therapist was poor because they had already devised their own communication methods by this point. Her husband would have liked some advice while she was in hospital on how to communicate with her, and found that the cards given to them later by the speech and language therapist would have been more appropriate at that stage:
. . . she brought the charts with her, the letter charts so that and then she brought charts that had pictures and stuff so you could, so Lisa could just be shown at it, so she could just point at things, like I say I’m hungry or I want a cup of tea, so I looked at them and I thought, well they’d have been handier in the hospital.
Lisa’s husband
Once they got the communication aids, they could have benefited from some more training, as Lisa struggled with getting used to the tablet and they were offered little choice.
Actively seeking information via asking questions or using the internet was a facilitator of ensuring that information was more usable. This was common when stroke survivors or their caregivers faced a problem and wanted to learn more to address the problem. Maude’s husband used the internet to gain information and reassurance about his wife’s diagnosis and prognosis of stroke while she was in hospital:
Well just look at the different types of stroke and the, and the difference between, you know, what the symptoms are of a transient ischemic attack and a full stroke and things of that nature, and the different types of stroke, whether they’re haemorrhagic or not and that was what I looked at, and it did seem that if you had to have a stroke, the best sort of stroke to have would be the one that Maude had so.
Maude’s husband
Building a support network is closely linked to actively seeking information. This enabled some of the stroke survivors and their caregivers to obtain the types of information they needed from a certain source of support. Jimmy and his wife attended a group for carers where they took part in a course over a number of weeks. They had the opportunity to engage in a one-to-one session at the end of the course to gain information that they may not have wanted to discuss in front of the wider group:
By the end of the course you could go up to them and say, you know, a one-to-one with anyone and say, ‘is there . . .?’, you know, and if you’ve got something that you’re thinking about you might wanted to have keep it private you know, between the person, not let anybody else on the course know about it, but you can speak to her, you know?
Jimmy
The level of interest and extent to which it meets their needs also plays a part in whether or not some of the stroke survivors make use of information. Alfred subscribed to a monthly magazine regarding his health and found it interesting to see how different people deal with their strokes. Cathy used information she was given in a folder by one of the community nurses. This comprised numerous sections, examples being ‘life after stroke’ and ‘social care and support.’ This information met her needs in terms of providing her with some understanding about the stroke and useful contacts for managing specific issues, for example benefits.
Sustaining flexible support networks
Stroke survivors used both formal and informal support networks as part of managing their ‘recovery’. Most of the stroke survivors talked positively about the formal support they received from health-care professionals while they were in hospital. Following discharge from hospital, there was a shift in the types of support they received. Examples of post-discharge support included family, friends, community nurses, other external agencies (e.g. Age UK, Stroke Association) and support groups. Once the stroke survivors left hospital, they had more choice in the support they wished to mobilise, although they were still restricted to some extent by access and availability. Support was also influenced by changes in circumstances of support providers (e.g. friends and family). Stroke survivors and their caregivers needed to find ways of sustaining support in the event of unexpected changes.
Stroke survivors and their caregivers experienced a range of barriers to being able to sustain support. Formal support such as physiotherapy was not available to all stroke survivors; this left some (e.g. Mavis) feeling angry because they wished they could have had this support. Many stroke survivors also suffered from a lack of support as, sadly, many family members and friends had died. Lizzy lost her husband, who died of cancer very close to the time of her stroke; this made managing with the stroke more difficult because he wasn’t around to help her. She described this as a ‘double whammy’ because she had to cope with being widowed and manage the impacts of the stroke:
Yeah. It was the double whammy of having, being widowed and the stroke so close together that it’s taken a bit longer. They did suggest that I’d had the stroke was maybe because of I hadn’t grieved properly for my husband.
Lizzy
Acceptance (or not) of support was one of the facilitators of being able to sustain support. Stroke survivors and their caregivers talked very little about support from social care and talked mostly about health care, third-sector organisations and informal support. Individuals were often accepting of support from friends, caregivers and relatives, yet more formal, group-based support was not as readily accepted. The extent to which support was accepted related to how appropriate it was for addressing their needs. David and Jane were not interested in attending groups because they did not think their strokes were bad enough.
As with the information, actively seeking support is a facilitator of gaining useful flexible networks. Lizzy had some input from a speech and language therapist, but did not feel that she was getting on very well, so she proactively got in touch with her to overcome this problem. She was given more exercises to try following this:
I called her back about 4 months after because I didn’t feel that I was getting on very well and she gave me some more exercises.
Lizzy
Accessibility can be both a barrier to and a facilitator of being able to engage with some types of support. Some stroke survivors wanted to be able to attend groups, but they were limited by their location and transport options. Others could be visited at home for health-related support, in which case accessibility was not problematic.
Engaging in meaningful activity
Stroke survivors needed to engage in meaningful leisure and home-based activities including golf, board games and housework. The meaning attached to these activities varied for different individuals. Some stroke survivors valued the social aspects of activities, others engaged in activities for enjoyment, to maintain a purpose or to keep busy.
Some individuals could engage in the same activities as before their stroke, some took part in some aspects of previous activities and others changed their activities as a result of the impairments caused by the stroke. For example, before her stroke Cathy was a teaching assistant. She was unable to continue in this role because of her physical and communication difficulties, but she had more time to engage in housework. She found new enjoyment in her role around the home, which keeps her busy following the stroke:
Oh, I’m just as busy in the house; I never thought I’d like housework! So I do that, I’ve been in the cloakroom with a vacuum this morning and I’ve got a bread machine so I make bread for us.
Cathy
Engagement in previously enjoyable activities was influenced by their physical abilities and level of confidence. Daphne played bowls before her stroke and lacked confidence initially. However, her captain encouraged her to keep playing, which gave her the confidence to continue, despite some physical impairments post stroke.
Accessibility was also influential in whether or not stroke survivors could continue to engage in meaningful activities. Some stroke survivors had informal support networks that could provide transport to enjoyable activities, which facilitated ongoing engagement post stroke. However, not all stroke survivors could rely on such support. Carla wanted to be able to attend a group, but, because of her rural location, lack of family close by, limited bus routes and inability to drive, her access was limited.
For some, the level of engagement in new or previous activities was influenced by motivation. Some stroke survivors lacked motivation following their stroke, which meant that they were reluctant to engage in activities. A change in or loss of identity as a result of physical changes to the self also served as a barrier to engagement in previously enjoyable activities. Paddy became physically impaired following his strokes, leading to changes in his self-concept. He described himself as active before the stroke and this loss of self has been a bit of a ‘comedown’ for him. To meet the needs of his new defined self as ‘less active’, he changed his activities, meaning he spends prolonged periods watching rather than playing football.
Some stroke survivors benefited from being encouraged to take on new activities. Cedric’s wife bought him a computer because she believed that it would be useful as part of his cognitive recovery. He later joined a computer class, which he finds enjoyable. Linked to this was the importance of building a support network for engaging in meaningful activities. This included support in a social sense or for physically attending an event. Lizzy is a representative of a sugarcraft club. She finds people who she can ‘double up’ with to get to her regular meetings, as she has lost her confidence with driving longer distances:
Yes. I’m a rep[resentative] for the sugar people as well, sugarcraft people and if we’re having meetings down in Brighton or something like that, I usually try and find someone I can double up with.
Lizzy
It was more difficult for stroke survivors to continue with activities if they experienced a lack of interest. Alfred no longer plays table tennis since he had his stroke; finding a potential replacement for this activity has been difficult, as table tennis provided him with enjoyment. It is the physical aspect of this activity that he has struggled to replace and he lacks interest in alternative activities such as bowls. Lack of money can also have an impact on the level of activity that stroke survivors can engage in. Carla lost her job as a nurse as a result of the stroke. She was caught up in a vicious circle as she is limited in what she can do without money, yet she was struggling to figure out what job she would be able to do instead.
Overcoming financial concerns
Some of the stroke survivors and their caregivers talked about financial difficulties during the interviews. Some stroke survivors and their caregivers had to give up work following the stroke and others were forced to increase their working hours to be able to cope financially (e.g. Paddy’s wife).
Obtaining benefits allowed some of the stroke survivors and their caregivers to manage, but the process for obtaining these was often problematic. Therefore, stroke survivors and caregivers had a need to find ways of overcoming this financial concern.
A common barrier to being able to obtain benefits was lack of information or awareness:
He said ‘I’m not being funny but you’ll get £200 a month for what you are’. ‘Oh’, I said ‘I wouldn’t know where to start or where to go’.
Timmy
The facilitator of overcoming this issue was ‘knowing the process’. Cathy emphasised the importance of knowing about the process of getting benefits earlier on. She knew about this only because she was given an information pack, but she found it stressful managing financial issues alongside adjusting to the impact of the stroke:
I think definitely people need to know about and they should be told that, I think, quite early on because I think it was November or no, October, I got in touch with the Independent Living Allowance and they send the form and it had to be in and again they can take as long as they want and you have a deadline, you have to have it with them.
Cathy
Building a support network was a facilitator of overcoming some of the issues around benefits. Some of the stroke survivors made links with charities such as Age UK that provide financial support (e.g. Lisa and her husband).
Maintaining relationships
There was a need among stroke survivors to be able to maintain relationships with significant others, including partners, other family members, colleagues and friends. The interview accounts reflect the diverse effects that a stroke can have on relationships. Some of the stroke survivors and caregivers in the sample experienced difficulties, but did not face a complete breakdown in their relationships as a result of the stroke. For example, Charlie’s wife recognised that he has become more ‘chompy’ since the stroke, and described her new life as a caregiver as stressful. Alternatively, others have become closer since the stroke. For example, Lisa’s husband believes marriage is about caring for each other so he takes the view that there is a change in that care. He does not think of himself as her carer and understands that she would do the same if the situation was reversed. This supports the importance of maintaining relationships for both the stroke survivors and the caregivers:
Interviewer:
You don’t think of yourself as a carer?
Lisa’s husband:
No, it’s just one of those things, when you’re a married couple you care for each other anyway, all it is is just a little bit of change in that care, that’s all, for me that’s all it is, it’s that the only . . .
Interviewer:
The thing that’s different, yeah, it’s a nice way of looking at it.
Lisa’s husband:
If it were the other way around, I know damn well she’d be exactly the same, you know what I mean, if things ever changed, if she had to do things that I’d normally do, she’d do it, so just that, just how it should be, isn’t it?
The concept of togetherness facilitated a maintenance of relationships. For Lisa’s husband, the sense of togetherness is reflected in his understanding that he is there for his wife and he knows this would be reciprocated if the situation was different. Cedric and his wife similarly talk about ‘looking after each other’, yet they talk about this in terms of how they work together as a team on a daily basis. There is a sense of appreciation and understanding, which has allowed them to maintain a positive relationship following Cedric’s stroke.
Acceptance also played a significant part in the maintenance of relationships. Some stroke survivors talked about this as a process that they worked towards over time. Paddy provided an account of how he reached acceptance. This involved consciously making a decision to accept the stroke because he did not want to become bitter and thinks he would have driven people away had he not accepted it:
. . . I think you’ve got to accept it, otherwise you’ll be snapping at everyone and falling out with everyone. You drive everyone away. You’d end up with no friends because people would get fed up of you, wouldn’t they?
Paddy
‘Building a support network’ of informal support was another approach to maintaining relationships with family members and friends beyond the relationships between the stroke survivors and their partners. Malcolm’s wife passed away 4 years prior to the stroke. He continues to maintain relationships with his friends, who have been an important part of his life since he has lived alone.
‘Disrupted couplehood’ is one of the barriers to maintaining a positive relationship. Conflict is one of the factors that can lead to disruption in relationships. Roger and his wife had disagreements regarding driving. He has struggled to come to terms with the loss of driving and, according to his wife, has become a back-seat driver. She believes this has caused a few problems and throughout the interview it was evident that they have had a number of arguments since Roger’s stroke:
Roger’s wife:
No, but there’s still . . . But the one thing with the driving is, Roger so misses the driving and my driving according to Roger is hopeless so . . . [Laughs].
Interviewer:
Yeah, mine is hopeless according to my husband as well.
Roger’s wife:
So it’s like having a back-seat, a side-seat and a front-seat driver! [Laughs] And it does cause a few problems.
‘Couplehood’ can also be disrupted by the loss of sexual relationships. Charlie and his wife recognised that their sexual relationship had suffered following the stroke. Paddy also mentioned that the stroke has affected the sex life of him and his partner, although he stated that they have both accepted this. His partner was not present in the interview; therefore, her perspective on this remains unknown.
The ‘burden of caring’ can also serve as a barrier to maintaining the relationship that some of the stroke survivors had with their partners before the stroke. In terms of managing each day, the stroke had an impact on some of the partners. When Lisa is feeling down, it also knocks her husband down. Charlie’s wife also feels the stress in coping with life after stroke. She thinks he can be very demanding now and it can be difficult making sure he is OK:
Interviewer:
Yeah, how is it stressful? What are the most stressful things about it?
Charlie’s wife:
Well it’s making ends meet and still running the house and making sure he’s OK and Charlie can be demanding at times, can’t you, love? When you’re in, when he’s having a bad day he can be . . .
Despite their caregivers feeling this burden at times, Charlie and Lisa have managed to maintain relationships, albeit that the dynamic has changed since the stroke. It is clear that the impact of the stroke can lead to a change in roles. This change was experienced more positively by some than others. This can be problematic for a relationship when the partners are no longer happy with their new role. For example, Michael’s wife took on a new gardening role, which would not be her preferred choice prior to the stroke. In such circumstances, it was important for couples to work together to try and embrace their new roles.
Becoming a caregiver is one of the most significant role changes. Their role typically involves spending most of their time looking after their loved one, who is dependent on them for support every day. Maintaining relationships can become difficult when there is a negative perception of the resultant change in dynamics. However, this new dynamic in the relationship can be positive when aspects of their marital relationships can be maintained. Arnie and his wife still chat together and have a cuddle as they would have done before the stroke.
Reconstruction of identity
A loss of functioning in part of the body or loss of confidence or memory following the stroke can lead to a change in a stroke survivor’s sense of self. Paddy experienced a loss of identity after the first of his three strokes left him physically impaired down one side. His sense of self as an active person has been lost since he has been unable to engage in physical activity. During the interview, he described his new self as ‘restricted.’ A reconstruction of identity is often required to address the loss of or change in identity as part of adjustment to life after stroke. Some require little reconstruction if they can maintain aspects of their previous self, for example independence. For others this can be more difficult and it means adjusting to take on new self-concepts that they did not previously hold.
Stroke survivors expressed the barriers to and facilitators of reaching the construction of a new identity. Acceptance was an important facilitator of achieving this. Iris knew that she was going to be disabled by her impaired functioning in her arm and leg, but she did not feel that there was anything that she could do, so saw no point in getting worried.
Self-concepts can be related to previous activities. It was therefore important for stroke survivors to find meaningful activities that suited their new identities, or allowed their previous identities to remain. Iris refers to herself as disabled following the stroke; when she was asked about herself as a person, she talked about herself in terms of the physical disability she has acquired. As she has adjusted to this new identity, she has looked for ways of meeting her needs, such as a holiday for people with a disability:
I have but I’ve never, I’ve said, I’ve told you about holiday flats or houses or that, well that’s not what I want, it’s something where I can go as an individual, that I could be taken there and sort of looked after there, carefully looked after and then brought back as well, but who understands what it is to be disabled.
Iris
Irreplaceable loss was a barrier to managing the new identity following the stroke. This refers to loss of what allowed them to define themselves as in a certain way prior to the stroke (e.g. as an independent person) and is related to different aspects of their lives (e.g. driving and working). Carla valued her independence in terms of being able to do what she wanted. Following the stroke, she has experienced a sense of irreplaceable loss in terms of this aspect of her identity. She acknowledged that she will not be what she was before (physically) and finds this really hard.
Stigma was also challenging for stroke survivors as they worked through a process of reconstructing their identities. During the interviews, stroke survivors talked about stigma in relation to being old, being like a baby, looking drunk and being less intelligent. Cathy perceived herself as intelligent before she had her stroke. The stroke caused her to become physically impaired and she needs to use a wheelchair when she goes out beyond her home. Visibly, she entered the social world with a new identity, but her intelligence was unaffected by the stroke. She noticed people acting differently towards when she used the wheelchair:
Well, just that they talk down to you. They don’t think you’re as intelligent and it’s not affected my intelligence.
Cathy
Fortunately, this did not stop Cathy from going out, but it could be problematic for other stroke survivors.
Managing beyond the home
Managing with life after stroke goes beyond the home environment. The home can be a safe space for regaining some of the control that is lost at the time of the stroke. In contrast, stroke survivors and their caregivers can feel less in control beyond their own home, as the outside world leads to numerous challenges. These include those that are within the built environment (e.g. inappropriate access for disabled people and lack of handrails) and those that occur in interactions with others. It is therefore important for stroke survivors to be able to manage beyond the home environment.
Cedric and his wife provide an example of a situation that reflects the difficulties that stroke survivors can experience beyond the home, both physically and in interactions with others. The built environment meant that the wheelchair became stuck at the airport, leading him to fall. People did not know what to do, so he was left struggling in this situation. Cedric tried to account for why people did not help him and suggests that this is a result of a fear of being sued. He also talked about lack of public awareness in terms of handling a stroke survivor, which complicated matters further for him:
Cedric’s wife:
And he’s, he’s difficult to get up now; for instance, yesterday, when we were coming off the plane, we always have a wheelchair for Cedric and there was a young girl, like, you, god love her, I felt right sorry for her, pushing Cedric, and there was a kind of a little hump and didn’t the wheels get stuck and he fell straight out of the wheelchair, right out on his legs, ‘cause he can’t save himself. So you know, I’m saying, ‘Don’t panic now, don’t panic,’ and I’m worse than anybody does, so once I can get him around he can get on his knees, then I can help him up, you know, and that’s a . . . you know, there was people at the back of us and they just stood looking at us.
Cedric:
People don’t want to get involved because they’re that afraid, I think, of being sued.
Interviewer:
Yeah, that’s true.
Cedric’s wife:
We’re not that kind of people, I took them into Morrison’s [Morrison’s Supermarkets plc, Bradford, UK] and he had a hot cup of tea.
Cedric:
Yeah, but they don’t know, a lot of people how to lift a person that’s had a stroke, you know, they get hold of your hand and try and pull it, well you don’t, you know what I mean [laughs]?
Examples of barriers to and facilitators of managing beyond the home are discussed as follows.
Accessibility can be both a barrier to and facilitator of managing beyond the home. Iris has no problem getting to places, as she makes use of taxis. However, she struggles when she arrives at her destinations. Therefore, she is reliant on support from others to manage. This links to the importance of ‘building support networks’, a facilitator for managing beyond the home. Stroke survivors often needed such support to feel safe:
Yeah, that’s what me daughter says you see, I sometimes take her out shopping and that on a weekend and she says, ‘You’re looking for your trolley when you get out, “Where’s the trolley?”. You don’t need your trolley, you’ve got me here’, which is right because, should something go wrong, she’s there.
Timmy
Walking aids were also a facilitator of physically managing for some of the stroke survivors (e.g. Timmy, Cathy). This was another way of protecting their safety and facilitating movement. Timmy has his trolley as a walking aid when he walks longer distances alone. This stops him from panicking in the absence of support.
Some barriers were also apparent for managing beyond the home where stroke survivors faced interactions with others. Some stroke survivors were reluctant to use wheelchairs and sticks because of the stigma attached to these. As a result, they did not often go outdoors. Paddy has limited mobility following his stroke. He uses a stick around the home and for short distances beyond the home. However, he is reluctant to use his wheelchair for longer distances because he thinks he looks like a baby if his wife pushes him around:
If she’s pushing me about, it’s like being a baby in a pushchair.
Paddy
Paddy assumes that people will think in this way; he has never had an experience where someone has told him he looks like a baby. He admitted he could be wrong and he might just be ‘being silly’, but it still stops him from going to some places, which affects the activities he can engage in.
