The ability to initiate (Box 2)
Patients preferred to initiate changes themselves. They, for example, initiated domestic adjustments, the purchase of a tool or the modification of PD-related pharmacotherapy to find a proper balance between the therapeutic and adverse effects of medication. If patients were able to initiate a change themselves, they had realistic expectations of it, which helped them accept the post-change situation, even if their impairments were not remedied (Q2.1, Q2.2, Q2.3).
Box 2  Quotes of community-dwelling PD patients illustrating the theme ‘The ability to initiate’.
Quotes related to the ability to initiate
• Q2.1 ‘Climbing over the edge of the bathtub is getting more and more difficult … so eventually it [renovating the bathroom] will have to be done. […] Then we better do it now, now I can still handle the inconveniences that come with a renovation’ (Male, 65 years, H&Y 1).
• Q2.2 ‘You cut yourself once, then another time … At first you think that things will be all right … but then you realize it is part of the process you’re in and you make a practical decision’ (Male, 63 years, H&Y 2).
• Q2.3 ‘Well, I wanted something [an electric shaver] that would be more comfortable, so I didn’t have to be afraid of cutting myself with a razor’ (Male, 63 years, H&Y 2).
Quotes related to the inability to initiate
• Q2.4 ‘During a planned visit with the Parkinson’s nurse … I told her I was drooling more and more … Then she said “Well, it can’t hurt to visit the speech therapist”. […] I hoped she [the speech therapist] would have a solution, but she just let me swallow water and told me it was all within the norm’ (Male, 65 years, H&Y 1.5).
• Q2.5 ‘Yesterday I took the pills at 10 pm. At 11 pm, my husband switched off the light. When I wanted to turn over in bed, I was barely able to do it. However, I had just taken those pills! I should have been able to do that [turn over] by then, shouldn’t I?’ (Female, 64 years, H&Y 2.5).
• Q2.6 ‘The effects I expected of the modification of my medication failed to happen … for example, fewer dips or a shorter period; that I would experience less trouble due to dips. Actually, that I would just feel better. […] However, looking back at the past few weeks, I’m disappointed about the effect’ (Male, 65 years, H&Y 1).
If a healthcare provider initiated a change in care, for example the consultation of other healthcare providers or modification of PD-related pharmacotherapy when symptoms got worse, patients had unrealistically high expectations of its results. As these expectations were usually not met, patients were disappointed and had difficulties accepting the impairments that remained after the change (Q2.4, Q2.5, Q2.6).