Strengths and limitations
To the best of our knowledge, this study is unique in its focus on community-dwelling PD patients’ coping with the moments changes in care occur. The design of the study has unique features. The monthly visits of the research assistant enabled us to respond quickly to changes in care and to interview patients shortly after these turning points in life, thereby limiting the risk of recall bias. In addition, the information gathered from the patients’ videos was used to tailor the interview topic guide, facilitating in-depth questioning in the interviews [19]. Moreover, our study population varied in sex, age, living circumstances and severity of disease. We succeeded to include two patients with H&Y stage 4; this is unique given the level of disability that comes with such a disease-stage. We, therefore, feel that we were able to make a valid contribution to the knowledge of the changes in care community-dwelling PD patient’s encounter and of their coping with these changes.
However, some limitations need to be taken into account. Most of the included patients had a mild-stage disease. The use of technical equipment and the long duration of data collection might have influenced this. The (expected) burden of making videos was a frequently mentioned reason not to participate in the first place, and one participating patient withdrew early for this reason. Patients willing and able to use technical equipment – such as the patients included in this study – might be more able to initiate and independently handle changes in care. It is possible that non-participants would have encountered more complex care changes that were more difficult to anticipate, initiate or handle independently. Our population, finally, came from a single regional setting in the Netherlands with well-developed specialized PD care. This population was not inclined to consult their GP for PD-related questions, as we know from an earlier study [16]. Patients in different areas might have different care experiences.