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

Abstract

BackgroundThe 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/DesignProspective 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.DiscussionThis 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.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-684X-13-52) contains supplementary material, which is available to authorized users.

The SUSTAIN Project: A European Study on Improving Integrated Care for Older People Living at Home

“…Using a multiple embedded case study design [3233], data are being collected from fourteen established integrated care initiatives for older people in seven European countries; Austria, Estonia, Germany, Norway, Spain, the Netherlands and the United Kingdom. The initiatives were already operating within their local health and social care systems.…”

Enhancing integrated palliative care: what models are appropriate? A cross-case analysis

“…This method is regarded as appropriate for palliative care contexts [12, 13]. A full account of the InSuP-C methodology is published [9]. …”

“…The Integrated Palliative Care in cancer and chronic conditions (InSup-C) study that started in 2012, aimed to investigate promising practices in Europe and to formulate requirements for effective palliative care integration across the continent [9]. Within the InSup-C project, the following working definition for integrated palliative care was empirically developed: ‘Integrated palliative care involves bringing together administrative, organizational, clinical and service aspects in order to realize continuity of care between all actors involved in the care network of patients receiving palliative care.…”

Relationship between palliative care consultation service and end-of-life outcomes

“…It focused on optimizing the quality of life of patients and their families who were facing problems associated with life-threatening illnesses through the prevention and relief of suffering by early identification and an impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems [2]. More recent research has found that palliative care improved relationships, stabilized emotional attitudes toward death, increased the rate of preference for dying at home, as well as contributed to improvements in the quality of care and the quality of life and death of severely ill patients and their relatives [3][4][5].…”