title: Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study.
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
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Marlieke
authors.initials: M
authors.lastname: van der Eerden
authors.affiliation: Department of Family Medicine, University of Pecs Medical School (UP), Pécs, Hungary.
authors.forename: Agnes
authors.initials: A
authors.lastname: Csikos
authors.affiliation: Department of Family Medicine, University of Pecs Medical School (UP), Pécs, Hungary.
authors.forename: Csilla
authors.initials: C
authors.lastname: Busa
authors.affiliation: Division of Health Research, International Observatory on End of Life Care, Lancaster university, Lancaster, UK.
authors.forename: Sean
authors.initials: S
authors.lastname: Hughes
authors.affiliation: Klinik für Palliativmedizin, Universitätsklinikum Bonn, Bonn, Germany.
authors.forename: Lukas
authors.initials: L
authors.lastname: Radbruch
authors.affiliation: Radiation Oncology Department, University Hospital Leuven, Leuven, Belgium.
authors.forename: Johan
authors.initials: J
authors.lastname: Menten
authors.affiliation: Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Jeroen
authors.initials: J
authors.lastname: Hasselaar
authors.affiliation: Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Marieke
authors.initials: M
authors.lastname: Groot
keywords: Integrated care; Mixed method; Palliative care; Patient experiences