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BMC Palliative Care
Published in: BMC Palliative Care 1/2014

Open Access 01-12-2014 | Study protocol

Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study

Authors: Marlieke van der Eerden, Agnes Csikos, Csilla Busa, Sean Hughes, Lukas Radbruch, Johan Menten, Jeroen Hasselaar, Marieke Groot

Published in: BMC Palliative Care | Issue 1/2014

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Abstract

Background

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.

Methods/Design

Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.

Discussion

This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.
Appendix
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Metadata
Title
Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study
Authors
Marlieke van der Eerden
Agnes Csikos
Csilla Busa
Sean Hughes
Lukas Radbruch
Johan Menten
Jeroen Hasselaar
Marieke Groot
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2014
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/1472-684X-13-52

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