Person-centred palliative care in five European countries: the experiences of patients and family carers

• Published in: International journal of integrated care 2016-12, Vol.16 (6), p.162
• Main Authors: Van der Eerden, Marlieke, Hughes, Sean, Varey, Sandra, Ewert, Benjamin, Schwabe, Sven, Busa, Csilla, Kiss, Zsuzsanna, Van Beek, Karen, Van Ende, Suzy, Csikos, Agnes, Hasselaar, Jeroen, Groot, Marieke
• Format: Article
• Language: English
• Subjects: Caregivers; Collaboration; Interviews; Palliative care; Patient-centered care; Professional relationships; Professionals
• ISSN: 1568-4156; 1568-4156
• DOI: 10.5334/ijic.2710

Introduction: Integrated palliative care (IPC) should be responsive to patients’ palliative care needs. However, knowledge about the best way to provide IPC is scarce. Evidence is mainly based on perspectives of professionals and carers. Therefore, the InSup-C project conducted a qualitative study on the experiences of patients’ and their carers’ with care provision in several IPC initiatives in five European countries. The aim of this study was to examine how IPC initiatives respond to patients’ problems and needs.Methods: IPC initiatives, i.e. cross-sector collaborations between professionals to provide palliative care, were recruited in five European countries (Belgium, Germany, Hungary, The Netherlands and the UK) between June 2014 and August 2015. From these initiatives patients with cancer, COPD and Chronic Heart failure (CHF) with a prognosis less than 12 months and their carers were recruited. Semi-structured interviews were conducted at baseline and after 3 months using uniform interview protocols. Interview protocols focused on patients’ problems and needs, identification of professionals in patients' care networks, quality of relationships with professionals and inter-professional collaboration. Interviews were transcribed verbatim. Transcriptions were coded using an internationally agreed codebook based on a qualitative thematic approach.Results: Hundred and seventy-five patients and 90 family carers were interviewed. Of 157 patients, 10% were from Belgium, 22% were from Germany, 22% were from the United Kingdom, 27% were from Hungary and 20% were from the Netherlands. Regarding diagnostic group, 62% had cancer, 13% had CHF and 25% had COPD. Mean age was 67 years and 55% were female.Of 90 family caregivers, 17% were from Belgium, 11% were from Germany, 14% were from the United Kingdom, 33% were from Hungary and 24% were from the Netherlands. Mean age was 59 years and 68% were female.The following four themes emerged from the data and related to person-centred care:- Compassionate care: Patients and carers valued professionals who saw the person beyond the illness and who were involved with them. This enabled a personal relationship and care that was being tailored to patient’s holistic problems and needs.- Patient-centred information: Patients and carers found it important that professionals were honest in giving information about prognosis and treatment possibilities and were patient in their explanation. This allowed patients and carers to as