The ability to act independently (Box 3)
If patients were able to solve their problems independently, they considered themselves to be the manager of the change in care, which led to a sense of control over the change itself and the situation afterward (Q3.1). This was irrespective of the apparent complexity of the change.
Box 3  Quotes of community-dwelling PD patients illustrating the theme ‘The ability to act independently’.
Quote related to the ability to act independently
• Q3.1 ‘Nowadays I take my medication more knowingly, taking into account that if I take my medication now, I’ll have my ‘low’ in two hours’ time. I have the feeling that I am less affected by it because I manage the situation. […] It’s the feeling that you’re the master of your own fate’ (Male, 76 years, H&Y 2).
Quotes related to the inability to act independently
• Q3.2 ‘Sometimes I’m angry that I’m no longer able to do it myself. […] At those moments, I have the feeling I should still be able to do it. Yes, it makes me sad’ (Female, 58 years, H&Y 1.5).
• Q3.3 ‘It’s hard to be dependent. I am not used to needing help. […] I prefer doing things myself. When you need help, it means you depend on other people’ (Male, 65 years, H&Y 1).
• Q3.4 ‘I think that’s a matter of embarrassment again. What will she [my neighbour] think of me? Will she think that I cannot do anything on my own anymore? […] I do not have that with my husband, because he is so familiar. […] When I ask my neighbour, I feel like I’m a whiner’ (Female, 58 years, H&Y 1.5).
• Q3.5. ‘If you can do it yourself, you can do it whenever you want to and in your own tempo. […] Now, I am more or less obligated to wait until he [my son] has time to do it [offer help]’ (Male, 59 years, H&Y 1.5).
Quotes related to acting together
• Q3.6 ’During the consultation with the neurologist we decided together to change the medication dose’ (Female, 70 years, H&Y 4).
• Q3.7 ‘I don’t want to do that [make the decision]. […] In my opinion, when a healthcare provider [neurologist] tries to help you, you should just listen and do what he says’ (Female, 75 years, H&Y 1).
Loss of the ability to act independently would lead to feelings of anger and grief (Q3.2 and Q3.3). Asking for help was difficult, and patients’ experiences differed depending on the person they asked for help (Q3.4, Q3.5).
If the help of a healthcare provider was inevitable, patients emphasized the importance of shared decision-making as this allowed them to be still involved and to maintain control over the change in care (Q3.6). One patient, however, stressed that, if a healthcare provider was involved, she did not want to be the one making the decision (Q3.7).