The ability to anticipate (Box 1)
Changes in care that were not foreseen by patients could be overpowering for them. For example, a patient who had been admitted to the hospital acutely realized that admission was inevitable but felt that his wishes had not been addressed. This contributed to his experienced lack of control at the moment of the change (Q1.1).
Box 1  Quotes of community-dwelling PD patients illustrating the theme ‘The ability to anticipate’.
Quote related to the inability to anticipate
• Q1.1 ‘I had the idea that Parkinson has caused my complaints…I told him [the GP] 10 times: “That is what I believe.” …but he persisted and then I had to go to hospital’ (Male, 67 years, H&Y 1.5).
Quote related to the ability to anticipate
• Q1.2 ‘Well, it [encountering a change in care] isn’t difficult. […] I know it is a progressive disease. […] I anticipate’ (Male, 63 years, H&Y 2).
Patients who expected a change to occur were mostly able to anticipate. Sufficient knowledge of the disease facilitated anticipation (Q1.2).