Results Study population Of the 15 general practices approached, three did not respond to the request for participation and three were not able to select patients who met the inclusion criteria. The remaining nine general practices selected 41 suitable patients, of whom 35 were willing to be approached by the researcher. Nineteen of these patients decided not to participate because of the burden PD gave them, the expected burden of making videos every fortnight or because of other personal circumstances. Sixteen patients participated in the study: eight during 1 year and eight during half a year. Three patients did not complete the follow-up period: one patient died, one patient withdrew because of the burden of comorbidity and one patient because of difficulties with storytelling to the video camera. The patients’ mean age at the start of the study was 68 years (SD 6.0). Most patients were male (N = 11). Most patients had an H&Y stage between H&Y 1 and H&Y 2.5 at the start of the study; only two patients were in H&Y stage 4 (Table 3). Table 3. Characteristics of the participating community-dwelling patients with Parkinson’s disease – including oversight of the experienced changes in care. Patient Code (A–J) Sex Age at start study (years) Severity of disease at start study: mild–severe (H&Y stage 1–4) Experienced change(s) in care (each line represents a separate interview and shows the discussed changes in care) Follow-up period (months) A Male 65 1 Modification of PD-related pharmacotherapyDomestic adjustment 12 B Female 58 1.5 Purchase of a toolChange in unpaid careDomestic adjustment 12 C Male 59 1.5 Change in unpaid care 12 D Male 76 2 Modification of PD-related pharmacotherapy (adverse effects) 12 E Male 63 2 Purchase of a toolDomestic adjustment 12 F Male 67 1.5 Acute admission to hospital, modification of PD-related pharmacotherapy 12a G Male 65 1.5 Involvement of a speech therapistConsultation of GP, consultation of neurologist, modification of PD-related pharmacotherapy 12 H Male 79 4 Acute admission to hospital 12a,b I Female 75 1 Consultation of GP, planned admission to hospitalConsultation of neurologist, modification of PD-related pharmacotherapy 6 J Male 73 2 Domestic adjustment, modification of PD-related pharmacotherapyConsultation of neurologist 6 K Female 70 4 Consultation of GP, consultation of neurologist, modification of PD-related pharmacotherapy 6 L Male 72 2.5   6a M Female 70 1   6 N Female 64 2.5 Modification of PD-related pharmacotherapy 6 O Male 65 1.5 Consultation of GP, ENT specialist and neurologist, modification of pharmacotherapy (laxative) 6 P Male 72 2 Consultation of neurologist, consultation of GP, modification of pharmacotherapy (laxative) 6 a Did not finish follow-up. b Deceased during follow-up. Two participating patients did not experience any changes in care (Table 3). Thirteen patients and one personal caregiver (replacing the patient who had died during the study period) were interviewed about 34 changes in care. Some patients were interviewed more than once because they experienced changes at different moments. The interview with the caregiver served to get insight into the type(s) of change the deceased patient encountered. A total of 21 interviews were conducted, each taking between 60 and 90 min. Encountered changes in care Patients faced a variety of changes in care such as changes in the level of unpaid care to prepare meals, the purchase of tools such as an adapted cup and the modification of PD-related pharmacotherapy because of hallucinations. Two patients were admitted to hospital acutely, and one patient had a scheduled admission for further investigation (Table 3). Patients’ coping with changes in care We identified three themes related to patients’ coping that influenced their experiences of changes in care and their acceptance of the post-change results: the ability to anticipate; the ability to initiate; and the ability to act independently. These themes will be explored below and will be illustrated with quotations. 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). 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). 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).