Being in control of Parkinson’s disease: A qualitative study of community-dwelling patients’ coping with changes in care

Figures & data

Table 1. Changes in care named as an example during the visits of the research assistant.

Change in care

A change in the extent of domestic help that is provided A change in the extent of personal care help that is provided A domestic adjustment (such as a bracket on the toilet or shower) The purchase of a specific tool (such as a walker or adapted cutlery) A modification of pharmacotherapy The involvement of a healthcare provider (including, for example, a physical therapist or a speech therapist), who was not involved before Consultation of the GP or medical specialist, if not part of routine follow-up Adaptation of working hours or type of work Admission to specialised day care or hospital

Table 2. Semi-structured interview topic guide (initial version^a).

Can you describe the change in care that took place? Can you tell me about your experiences with this change in care?  How did you experience it?  Can you describe if anything or anyone influenced your experience? And, if so, how did this influence your experience? Can you tell me about your coping with this change in care?  How did you cope with this change in care?  Why did you cope with it this way? Can you describe your considerations?  Can you describe if anything or anyone influenced your coping?  And, if so, how did this influence your coping?

^a The guide was adapted as the study proceeded; information from the patient’s videos was used to tailor the guide for each interview.

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 pharmacotherapy Domestic adjustment	12
B	Female	58	1.5	Purchase of a tool Change in unpaid care Domestic 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 tool Domestic adjustment	12
F	Male	67	1.5	Acute admission to hospital, modification of PD-related pharmacotherapy	12^a
G	Male	65	1.5	Involvement of a speech therapist Consultation of GP, consultation of neurologist, modification of PD-related pharmacotherapy	12
H	Male	79	4	Acute admission to hospital	12^a^,^b
I	Female	75	1	Consultation of GP, planned admission to hospital Consultation of neurologist, modification of PD-related pharmacotherapy	6
J	Male	73	2	Domestic adjustment, modification of PD-related pharmacotherapy Consultation of neurologist	6
K	Female	70	4	Consultation of GP, consultation of neurologist, modification of PD-related pharmacotherapy	6
L	Male	72	2.5		6^a
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.