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Almost everyone who works in healthcare aims to create person-centered care. That is care which is accustomed to the needs and questions of the network that has to deal with a disease. But, in our day to day practices, it is hard to take time for reflection on what actually is the ‘person-centeredness’ in the care that we provide. This project aims to ‘see’ person-centered care, to ‘catch’ the person’s behind the person with Parkinson's and their care professional, and to capture the ‘essence’ of their relationship. Next to more conventional qualitative methods, we used an innovative approach: we worked together with an artist. A photographer. Whether we indeed ‘caught’ person-centered care, we leave to the viewer. In any case, our approach yielded a powerful combination of intimate words (quotes) and imagery (portraits) that describes and ascribes key elements of person-centered care: touch, diagnostics, support, activation, time, self-image, and so on. Next to academic output in the form of a book, and two papers, the unique combination of narratives and photographs is now also used in the education of care professionals and university students.

Drooling is an incapacitating feature of Parkinsons disease. Better pathophysiological insights are needed to improve treatment. In this study, we tested the hypothesis that the cause of drooling is multifactorial. We examined 15 patients with Parkinsons disease with distinct diurnal saliva loss ("droolers") and 15 patients with Parkinsons disease without drooling complaints ("nondroolers"). We evaluated all factors that could potentially contribute to drooling: swallowing capacity (maximum volume), functional swallowing (assessed with the dysphagia subscale of the Therapy Outcome Measures for rehabilitation specialists), unintentional mouth opening due to hypomimia (Unified Parkinsons Disease Rating Scale item), posture (quantified from sagittal photographs), and nose-breathing ability. We also quantified the frequency of spontaneous swallowing during 45 minutes of quiet sitting, using polygraphy. Droolers had more advanced Parkinsons disease than nondroolers (Unified Parkinsons Disease Rating Scale motor score 31 vs 22; P=.014). Droolers also scored significantly worse on all recorded variables except for nose breathing. Swallowing frequency tended to be higher, possibly to compensate for less efficient swallowing. Logistic regression with adjustment for age and disease severity showed that hypomimia correlated best with drooling. Linear regression with hypomimia as the dependent variable identified disease severity, dysphagia, and male sex as significant explanatory factors. Drooling in Parkinsons disease results from multiple risk factors, with hypomimia being the most prominent. When monitored, patients appear to compensate by increasing their swallowing frequency, much like the increased cadence that is used to compensate for stepping akinesia. These findings can provide a rationale for behavioral approaches to treat drooling.

Additional file 1. The NICE-PD SPIRIT 2013 checklist.

Interview guide for individual interviews and focus group discussions. (DOCX 39 kb)

Interview guide for individual interviews and focus group discussions. (DOCX 39 kb)