The results of this study include two main categories related to the patients’ experiences of involvement, motivation, and coping: the physiotherapist’s role and the patient’s internal process. The themes identified under these categories are presented in Table 4.
Table 4. Findings of the patients’ empowerment process.
The physiotherapist’s contributions
This category relates to how the participants experienced the physiotherapist’s role in their involvement, motivation and coping strategies during subacute rehabilitation. Three themes emerged from the participants’ stories: motivation through goal attainment, transferring knowledge and building self-efficacy through a good relationship.
Motivation through goal attainment
Most of the participants remembered discussing the main goals or purposes of treatment with either their physiotherapist or the interdisciplinary team. They all experienced a common understanding of treatment goals with the physiotherapist. These goals, the most important of which were to be able to walk independently and to be able to live at home, were especially important for the participants’ motivation early in the rehabilitation process.
Most participants felt the need to set realistic goals when working with the physiotherapist. However, some had ambitious goals that they thought were unrealistic or achievable only in the very long term, like Participant 3 who laughed while saying, ‘If somebody asked me, of course I am going to be able to run! No, I can forget about that’. Even if the participant did not think it would ever happen, this goal inspired and motivated him. A few had short-term goals that they worked towards on their own, while others wanted their physiotherapist to set the short-term goals for them.
Patients’ goals and progress had a great impact on their motivation, as well as on their self-efficacy. Experiencing progress was essential for maintaining a positive attitude. Each step closer to the goal was an achievement.
You know, if you set some goals and you reach them, you also make some achievements. For most of us that is important. If you don’t have any goals, you won’t experience triumphs either. (Participant 1)
Transferring knowledge – slowly becoming the expert
The participants viewed the physiotherapists as very knowledgeable – as experts. They felt reassured by the physiotherapists’ approach because the physiotherapists shared their knowledge and gave understandable explanations. Trusting in the physiotherapists and their knowledge led the participants to act as they advised.
I have wanted to do exactly as the physiotherapist tells me to. I am not the expert, she is. That is why she is here. It would be idiotic not to do so when you have an expert at your disposal. (Participant 1)
Even though the participants viewed the physiotherapist as the expert, some felt they had regained knowledge and experiences to try out activities against the physiotherapist’s advice.
All the participants experienced physical impairments. Becoming more knowledgeable about stroke gave them an understanding about how the body functions and recovers after a stroke. The physiotherapists’ explanations were also important for the participants’ understanding of the physiotherapists’ priorities, especially if these priorities deviated from the patients’ own. Participant 2 and his physiotherapist had different views about what was important to focus on for the treatment: the participant wanted his strength back, while the physiotherapist wanted to focus on stability and balance first. Participant 2 said,
It was fair enough, she [physiotherapist] explained why. At first, we must get control and balance, so the nerve pathways would be rebuilt correctly. You know, the brain controls the muscular system. She explained to me that there is no point in being strong if you can’t master walking. So, it was very good feedback as to what I should prioritize in the beginning.
Participant 6 clearly expressed that it was a collaboration and that he and the physiotherapist contributed different knowledge. The participant underlined that the physiotherapist needed to understand how he experienced his body to know what to plan for, and to adjust the treatment appropriately:
It is cooperation. It’s indisputable, it’s my body we are dealing with, you know. That is what we are going to build up, and it must be done based on how I experience my body. While she [the physiotherapist] knows nothing about that, really.
The knowledge the participants gained made most of them more aware of the importance of their activities. They learned how to customise the intensity when training, to correct themselves, and at the same time motivate themselves.
I got good explanations all the time. And I have used them here (at home) as well, a lot! And I still do. (Participant 5)
The exercises, I did them so many times that I know what to do. (Participant 3)
Building self-efficacy through a good relationship
Although the participants called the physiotherapists experts, most of them felt they could contribute with their own knowledge, especially in terms of how they experienced their own body, both during and after treatment. They felt that this knowledge affected their treatment plan. Participants felt the necessity to be involved to varying extents. Participant 1 felt that ‘the interaction with the therapist is essential. It would be wrong if she did all the work without explaining why’. Participant 4, on the other hand, was satisfied with the physiotherapist’s plan: ‘They know what they are doing. It is not like they are experimenting on us; they have experience in this’.
A good relationship with the physiotherapist was important for collaboration. The participants reported having open communication, where they felt at ease and were not afraid to ask questions. A good mood and laughter were also important aspects of the interaction. The participants praised both the personality and the communication skills of the physiotherapists. The participants preferred specific feedback, as this was perceived as actual progress. Feedback on progress increased their motivation and self-efficacy. They also experienced that the physiotherapists supported them and gave them hope. As Participant 2 put it;
Oh yes, she encouraged me! She pointed out how I was progressing. It was really good feedback. It gave me some hope!
The patient’s internal process
The participants also described other factors that were important for their empowerment process, namely their innate attitude and determination, comparison and interaction with other patients, the importance of feeling well and how they fended off passivity.
Attitude and determination
All the participants were aware of how their own attitudes and determination influenced their motivation and how they coped with their disability. They described their own attitudes as a positive trait, and it made them believe that they would recover. Although Participant 6 was positive, he also felt that he was to blame for his stroke because of the way he had lived his life. He was aware of his responsibility for his rehabilitation and was grateful for the help he received. For Participant 2, faith in God was important both for comfort and how to cope. The experience of letting Him support and take care of you through the challenges ahead; ‘It is a comfort. No matter what, God does not abandon you’.
Although they all had positive attitudes, the participants’ coping strategies differed. A few wanted to be taken care of and did not do much on their own, whereas others were more aware of the importance of their own effort. Their self-confidence and self-efficacy had a great impact on their activity level. Looking ahead was one way of dealing with the great changes that followed a stroke. Participant 1’s coping strategy was not to think about how things had been, but rather to look ahead and celebrate the progress he had made. It was discouraging for him to compare his current situation and the progress he had made to how he had been before the stroke.
Your mind is extremely important. If you say, ‘I can’t do this’, you can just forget about it. There is only one way, and it is only up to you. To put it bluntly, you can easily achieve nothing! (Participant 1)
Several participants described themselves as impatient. They wanted to do as much as they could to achieve their goals. They believed that being impatient made them more active and gave them motivation to exercise on their own. Some also pointed out that becoming more knowledgeable would prevent them from hurting themselves or doing the wrong activities.
I felt the activities helped, so I continued after the sessions with the physiotherapist. They had to hold me back because I was eager. (Participant 5)
Some participants were very compliant with the physiotherapist’s advice on what activities they could do on their own. The ones who disregarded the advice of their physiotherapist explained that they had made the assessment that they could manage on their own. Most of the participants were oriented towards finding good solutions to their challenges. They wanted to define their problems and set goals, and to find strategies to help them accomplish those goals. They knew that it would take time, and they were willing to learn.
First, you must define your problems, right? Then you must find a way to solve these issues. From there, you will see if you have succeeded or if you chose the right way to do it. The first word that I can think of is help. You get tons of help here. You can use the help to cope with your problems. The most important thing we do here, we play on the same team and have a positive attitude towards everything we do. (Participant 6)
Comparison – it could have been worse
The participants spent a lot of time with the other patients in the rehabilitation unit. They got to know each other, shared experiences, and supported each other during their stay. Being able to support others was felt to be as valuable as receiving support. At the same time, many of them observed and compared their progress to that of others. This made them notice which strategies seemed to work. More than one commented that the most inactive patients did not have the same progress as those who applied themselves. They observed that a person’s activity level was important for his progress. They celebrated the other patients’ progress, and it gave them hope and motivation.
I could actually see the changes, in his hands, sitting across from him. I could see the progress, and he was so pleased. (Participant 3)
The importance of well-being
All the participants were satisfied with the rehabilitation. They developed good relationships with the other patients and the staff. The participants emphasised the importance of humour and positive attitudes of the staff at the unit. It gave them joy and motivation. The participants also felt that the staff genuinely cared for them. They did not just have conversations related to their disease but felt that they also got to know the staff. The staff often pointed out the participants’ progress and gave positive feedback.
It was everything, really, that provided motivation, all the great people there. They pushed you with positivity and optimism. It really kept you going. (Participant 2)
Having family support was important for the patients. They found that their families were welcome at the rehabilitation unit. Both the welcoming atmosphere and the participants’ progress gave the families a positive attitude towards the rehabilitation, which further enhanced the participants’ motivation.
The family is welcome, whenever. They are also very pleased when they see that I can move my finger like this. They are overwhelmed. That gives my positive attitude a boost as well. (Participant 6)
Fending off passivity
One reason for the experience of passivity was that the staff were very accommodating. The participants’ perceived this as due to limited time and it was often more efficient for the staff to help them rather than support them in their activities. Participant 1 had told the nurses that he could do the activity himself if he just got more time to do it. In the beginning, he felt that he needed the help, but after a while, he felt it was an obstacle to his independence. He said to the staff, ‘I have to do this myself. I can’t take you home with me to tie my laces’.
Some of the participants felt that the limitations the physiotherapists set for them as to what they were ‘allowed’ to do on their own prevented them from being as active as they would have liked. Some of them did what they wanted, regardless of the physiotherapists’ warnings, while others complied with the limitations, even if they thought they could manage.
I was a bit constrained by the physiotherapist, by the safety requirements. I would have liked to walk with a walking aid, but I am not allowed to yet. There are supposedly some requirements I must fulfil before I am allowed to, and I have accepted that. (Participant 6)
Insecurity also contributed to the passivity of some participants, especially in the beginning of the rehabilitation stay. They were unsure about what stroke and rehabilitation entailed, what the expectations for their activity level were and whether they could or ought to use the gym on their own. This insecurity led to decreased independent activity, and for some it might have been an obstacle to involvement when setting goals at the start of the rehabilitation. One participant experienced mixed messages from the doctor in the rehabilitation unit and his GP regarding how physically active he could be. This increased his insecurity when returning home.