Methods

Study design
We performed an exploratory qualitative study using semi-structured interviews with community-dwelling PD patients in the Netherlands. Purposive sampling of patients was chosen to get a broad view of the different ways patients cope with changes in care. Interviews were chosen as data collection method to gain in-depth insight into the different coping strategies.
The research ethics committee of Radboud University Medical Center examined the study protocol and concluded that the study could be carried out in the Netherlands without requiring approval by the accredited regional research ethics committee (11 December 2013). Written informed consent was obtained from all participating patients.

Selection of study subjects
This study was part of a larger project on community-dwelling PD patients’ coping and experiences with changes in care [15,16]. Between September 2013 and November 2014, 15 general practices in and around Nijmegen (the Netherlands) were asked to select patients that met the following criteria: a diagnosis of PD (established by a neurologist according to accepted criteria); community-dwelling; capable of handling a video camera with instructions; and no severe memory problems that the GP expected to interfere with retrospective interviewing [15]. A purposive sample of patients – based on age, gender and severity of PD according to Hoehn and Yahr (H&Y) [17] – was approached by their GP.
When a patient agreed to participate, the researcher AP (a medical doctor with experience in qualitative research) gave information that was more detailed and asked the patient for informed consent. Initially, patients were asked to participate for a period of 1 year. After inclusion of eight patients, we reduced the study period to 6 months because patients mentioned that 1 year was rather too long. The point of data saturation determined the final number of included patients. Data were collected between January 2014 and June 2015.

Data collection
Supported by an instruction manual, patients made a video once a fortnight [15]. Once a month, a research assistant visited the patient with a two-fold purpose. On the one hand, the visit was used to collect the patients’ videos, allowing the researchers to get a verbal and non-verbal impression of the physical and mental state of the participating patients. On the other hand, the assistant would ask the patients if they had encountered a change in care, naming some exemplifying changes (Table 1) and stimulating the patient to tell more [15].
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 providedA change in the extent of personal care help that is providedA 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 pharmacotherapyThe involvement of a healthcare provider (including, for example, a physical therapist or a speech therapist), who was not involved beforeConsultation of the GP or medical specialist, if not part of routine follow-upAdaptation of working hours or type of workAdmission to specialised day care or hospital If patients had experienced a change in care, they were interviewed face-to-face in their own home by a skilled interviewer (AP), who had no professional relationship with the patients. A brief topic guide based on expert opinion was available with core questions and optional prompts. This guide was tailored using specific individual information from the patients’ videos, which were not analysed in further detail (Table 2). Interviews were recorded and fully transcribed.
Table 2.  Semi-structured interview topic guide (initial versiona).
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. More detailed information on recruitment and data collection can be found in the study protocol [15].

Data analysis
ATLAS.ti 7, a computer programme for qualitative data analysis, was used to support coding the interviews. Analysis of the anonymous transcripts started as soon as the first interviews had been transcribed and was an iterative process using an inductive approach to comparative content analysis [18,19]. Two researchers (AP, AVL) independently read all transcripts and applied codes to meaningful words or sentences. Codes were discussed, seeking agreement for their content. New codes arising from these discussions were applied to the transcripts. Codes were grouped into themes, and final themes were agreed upon with the supervisory committee (all authors). Themes were used to adapt the interview topic guide and to progressively focus and explore data in-depth. After analysis of 16 interviews with 12 different patients, no significant new codes emerged. Conduction and analysis of five additional interviews confirmed saturation.