Galekop, Milanne M. J., Hanna M. van Dijk, Job van Exel, & Jane M. Cramm (2019, November). Views of professionals and volunteers in palliative care on patient-centred care: A Q-methodology study in the Netherlands. BMC Palliative Care, 18(1), art. 97. 9 pp. (Open Access) (doi: 10.1186/s12904-019-0479-5) (Link: https://doi.org/10.1186/s12904-019-0479-5)

Abstract: Background: Patients with palliative care needs, require support with their physical needs, but also with their emotional, spiritual and social needs. Patient-Centred Care (PCC) may help organizations to support these patients according to their needs and so improve the quality of care. PCC has been shown to consist of eight dimensions, including for instance access to care and continuity of care, but these eight dimensions may not be equally important in all care settings and to all patients. Furthermore, the views of those involved in care provision may affect the choices they make concerning care and support to patients. Therefore, insight into how professionals and volunteers involved in palliative care delivery view PCC is important for understanding and improving the quality of care in the palliative sector. Methods: This study was conducted in the palliative care setting (hospices and hospitals) in the Netherlands. Views on palliative care were investigated using the Q-methodology. Participants were asked to rank 35 statements that represented the eight dimensions of PCC in palliative care settings, and to explain their ranking during a follow-up interview. Ranking data were analysed using by-person factor analysis. Interview materials were used to help interpret the resulting factors. Results: The analysis revealed two distinct viewpoints on PCC in palliative care: ‘The patient in the driver seat’, particularly emphasizing the importance of patient autonomy during the last phase of life, and ‘The patient in the passenger seat’, focussed on the value of coordination between professionals, volunteers and patients. Conclusions: The most distinguishing aspect between views on PCC in palliative care concerned control; a preference for the patient in the driver’s seat versus shared decision-making by a team consisting of patient, professionals and volunteers. Different types of care and support may be most adequate to satisfy the different needs and preferences of patients with either of these views.

Milanne M J Galekop <galekop@eshpm.eur.nl> is in the Erasmus School of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.

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