Although Parkinson’s Disease (PD) is traditionally viewed as a movement disorder, in the past 10 years, the high burden of difficult-to-manage non-motor symptoms, high caregiver distress, and a high utilization of medical services especially in the last year of life has become evident. Similarly to cancer patients, albeit for a longer duration, PD patients have considerable (and mounting) unmet physical, psychosocial and spiritual needs, and experience great problems with coordination and continuity of care. The overall ambition of this project is to integrate palliative care with traditional care and suggest a new model of palliative care focused on the patient's quality of life along the entire course of disease. This project will provide an added layer of support to patients, their loved ones, and treating clinicians. It will provide evidence on the effectiveness of the specialized, multidisciplinary, outpatient palliative care team involvement towards improved family satisfaction, better symptom management and quality of life for patients with PD as well as reduced care costs. Additionally, it will provide further evidence that the use of Advance Care Planning (ACP) can help the later care of PD patients and will promote caregivers’ support. This project brings together a multidisciplinary team with extensive expertise in Palliative Care and in Randomised controlled trials in PD that will also develop evidence based Guidelines and a MOOC for Palliative Care in Parkinson’s Disease involving in the process experts from the European Association for Palliative Care, from the the European Academy of Neurology and from the Movement Disorders Society. Thus, this project is best positioned to transfer this knowledge to all European countries and ensure that the guidelines will translate into best practice. The MOOC “Best Care for People with Late Stage Parkinson” will be integrated into the WHO supported interdisciplinary postgraduate palliative care curriculum.
The project participants are Universita Degli Studi Di Padova (Italy), Stichting Katholieke Universiteit (The Netherlands), PD Neurotechnology LTD (United Kingdom), Panepistimio Ioanninon (Greece), King's College London (United Kingdom), Mediolanum Cardio Research SRL (Italy), University College London (United Kingdom), Estonian Movement Disorders Society (Estonia), PMU Salzbug (Austria), Philipps Universität Marburg (Germany).
Having a population with increase life expectancy which faces progressive chronic illnesses there is necessary that future physicians to receive a proper training according to patients’ needs. These patients need palliative care for relief of uncontrolled symptoms, psycho-social and spiritual sufferance, so that the quality of life is improved.
As Romanian National Agency for Quality for Undergraduate Education (ARACIS) states that palliative care is a mandatory discipline for medicine students, our project Translating International Recommendations into Undergraduate Palliative Care Curriculum (EDUPALL) comes as support for medicine faculties by developing and piloting a palliative care curriculum based on EAPC recommendations.
Partners in this project are: Transylvania University, Brasov-applicant, EAPC, Belgium, Aachen University, Germany, All Ireland Institute of Hospice and Palliative Care, Medicine and Pharmacy University, Timisoara, Medicine and Pharmacy University, Targu-Mures, Medicine and Pharmacy University Grigore T. Popa, Iasi, HOSPICE Casa Sperantei, Brasov.
The WHO Collaborating Centre at the PMU has been invited to participate in this projects as an associate partner.
Many nursing regulatory and educational bodies require nurses, at point of registration, to be able to address the personal, religious and spiritual beliefs of their clients as part of person centred holistic care. How learners acquire these skills, however, is less clear. Currently, there is a great deal of innovation in the teaching of spiritual/person centred care that needs to be captured, shared and built upon to ensure nursing students are equipped to address the holistic needs of the people they care for. This will ensure the nursing workforce of the future is prepared to address some of the global challenges that are impacting upon international nursing and healthcare.
The aims of the project are to:
Establish a sustainable network and partnerships where nursing educators can share experiences, research and resources related to spiritual care, to inform their teaching.
Enable nursing educators to acquire new knowledge/skills in the learning and teaching of personal, religious and spiritual aspects of person-centred care.
Review how personal, religious and spiritual aspects of care are currently addressed in a sample of Higher Education Institutions (HEIs) from across Europe.
Analyse current practice identifying factors and processes that enable or inhibit the teaching of these areas in nursing and midwifery curricula.
Develop and test an innovative, dynamic and flexible Spiritual care Matrix for pre-registration nursing and midwifery education based upon international best practice and evidence which can be adopted by HEIs across Europe.
Identify strategies and develop resources to inform professional regulatory bodies and key stakeholders.
Ensure the project is informed by student and patient/public representatives.
This project has the potential to generate a rich insight into current educational practice, enable the sharing of best practice and the development of a uniform approach to how personal, religious and spiritual beliefs are incorporated into nursing curricula through the generation of guidance.
The project is led by nurse educators from six universities in Malta, the Netherlands, Norway and the UK. The WHO CC at the PMU is invited to join this project as a multiplicator for German-speaking countries.