When the participants talked about their own self-management, most commented that self-management was a long-term learning process. This started after discharge, and it had taken quite some time to adjust to the stroke and to manage their lives again. Many participants spoke about their adjustment after stroke when they explained their process of self-management.
Many participants reflected that they were not ready to self-manage immediately after discharge. A participant said this: ‘If you’re at home, then you still cannot do it alone. That
takes much longer!’ (FG-1). To develop self-management post-stroke, participants expressed
that there was a need to be selfish. One participant said, ‘Well, it just happens to you. If you
want to recover, then you have to work for it. Another person cannot do that for you’ (FG-2).
Participants said that they even had to become a bit stubborn to learn to manage activities themselves.
To learn to manage the residual symptoms post-stroke and to do activities that were important to them, participants prioritized and planned their activities carefully. They used information about their illness and often tested the boundaries of their limitations with trial and error to learn how to manage their activities step-by-step. This was expressed by a participant, who said, ‘You need to explore your limits until you bump with your head
against the wall … and then say, “Well, well, I have somehow gone too far!” That is a learning moment for the next time’ (FG-2). When prioritizing their activities, some participants
stressed that they chose to do enjoyable things, such as a man who said the following about his visits to his singing choir: ‘There are some things that are fun. There I am allowed to
enjoy it and be tired’ (FG-2). Making these choices gave the participants the feeling that
they were able to manage themselves and give meaning to their daily lives. In several examples, participants spoke about the consequences of medical conditions and about role changes, such as a woman who revealed the following about the changes in her role as a friend: ‘You have changed as a friend; you can no longer do all the nice things together.
Okay, you can walk a bit, but the friendship has changed ... What we first did together, I cannot do anymore’ (FG-1). The management of changes in her role as a friend (role management)
Table 2 Understanding and Comments of Participants on Self-Management
Self-management is:
“The director of your life in your hands” “Do it yourself”
“Regulate it yourself” “Self-employed without staff”
“Learning yourself to live” “I can care about myself”
“Problem solving” “Trying”
“Just go my own way as before”
“Put your life on track without too much interference from the environment” “Let me do what I can”
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How Is Self-Management Perceived by Community Living People after a Stroke?
3
were consequences of the way she needed to cope with her fatigue (medical management), and this was difficult for her to accept (emotional management).
Although most participants were reluctant to fully accept the impact of their stroke, they expressed that reconciliation towards the varied impacts of their stroke on lifestyle was necessary before they could truly manage their own lives. Furthermore, it was apparent that participants’ awareness of abilities and deficits promoted adjustment and learning towards managing life post-stroke. For example:
You regularly stumble—you experience different things. Every time that … uh … that you are brought to a halt, it is because you cannot go on. And then slowly, then you learn what you can and what you cannot, and then you adjust, uh—at least that is what you need to do; if you want it or not, you just have to adjust. (FG-2)
One outcome of the learning process was that participants had gained insight and had become more realistic and honest about their capacities. They experienced that activities often cost more time and energy, and they took this into account when it came to managing their own lives. They were listening to their bodies much better than before, and they perceived this to be part of their self-management. Related to fatigue, a participant said, ‘It is heavy work to clean the whole house. But I can do a part of it. Yes, and every time I try a bit further—but you have to rely on yourself.…Yes, the body gives a sign how far you can go’ (FG-1). The participants who experienced limitations in their communication explained how they had learned to manage it and to advocate for themselves in being honest about their communication skills to others. One participant said, for example, ‘If I make a call to a doctor or speak with a foreign person, I directly say, “Sorry, this conversation may be a bit weird. I’ve had a stroke”. And then they understand’ (FG-1).
The complexity of the process of self-management post-stroke had to do not only with the participant but also the social environment of the participant, which is explained in the next section.