Μαρία Μπούρη

 https://www.eapcnet.eu/wp-content/uploads/2021/11/EAPC-Toolkit-GREEK.pdf 

Η παιδιατρική ανακουφιστική φροντίδα (pediatric palliative care) αποτελεί ένα σχετικά πρόσφατο αλλά ταχύτατα αναπτυσσόμενο επιστημονικό πεδίο που αφορά την εξειδικευμένη φροντίδα παιδιών και εφήβων με χρόνιες και απειλητικές για τη ζωή παθήσεις. Ορίζεται ως η ολοκληρωμένη φροντίδα σοβαρά άρρωστων παιδιών και εφήβων, η οποία παρέχεται από διεπιστημονική ομάδα κατάλληλα καταρτισμένων επαγγελματιών υγείας και αποσκοπεί στην ιατρική και νοσηλευτική αντιμετώπιση των συμπτωμάτων της νόσου, όσο και στην ανταπόκριση στις συναισθηματικές, κοινωνικές και πνευματικές ανάγκες των παιδιών αυτών και των οικογενειών τους. Θεμελιώδης στόχος της παροχής παιδιατρικής ανακουφιστικής φροντίδας είναι η επίτευξη της βέλτιστης δυνατής ποιότητας ζωής για το παιδί ή έφηβο που βιώνει μια απειλητική για τη ζωή πάθηση, καθώς και για τα μέλη της οικογένειάς του.  

Ακολουθεί ένα απόσπασμα από τo Δελτίο Τύπου για τη έκδοση της Ευρωπαϊκής Εταιρείας για την Ανακουφιστική Φροντίδα (European Association for Palliative Care: 2019 Atlas of Palliative Care in Europe:  
4.5 million Europeans die each year in need of palliative care, while there are 6,388 specialized services in the Region: 
 
-40% of European nations have half or more of the number of services the European Association for Palliative Care (EAPC) recommends according to the 2019 Atlas of Palliative Care in Europe, coordinated by the University of Navarra Madrid- May 21, 2019. Around 4.5 million Europeans die every year in need of palliative care, while 6,388 services specializing in palliative care have been identified in the region, according to data included in the 2019 Atlas of Palliative Care in Europe,coordinated by Carlos Centeno, principal investigator of the ATLANTES Program at the Institute for Culture and Society (ICS) and director of Palliative Medicine at the Clínica Universidad de Navarra (Spain). It received financial support from Banco Santander.
The Atlas includes data reports from 321 international experts from 51 countries, according to whom 47% of the seservices are concentrated in Germany, the United Kingdom, France and Italy. 40%of European nations have half or more of the number of services the European Association for Palliative Care (EAPC) recommends, specifically two per 100,000 inhabitants.
 
Pediatric palliative programs in 38 countries
 
The Atlas also reminds us that the adult population is not the only one in need of palliative care: 140,000 European children die every year in need of palliative care and 38 countries have pediatric palliative care programs.
Inits third edition, the Atlas explores for the first time aspects such as the integration of palliative care in primary health care and in other departments, volunteering and the work of academic societies on this specialty’s development.
Regarding the former, 12 countries have systems to identify patients in need ofpalliative care during primary care, although most provide it in the last month of life. Likewise, 10 nations integrate this service early in their Oncology Departments;8 do so in Cardiology, and 14 do so in in Long-Term Care Facilities.
Regarding the vitality of the profession, the research team points out that 41 countries have a national palliative care association. Likewise, in eight countries there are more than a thousand volunteers registered, who support health care providers’ work.
To keep this momentum going, the researchers stress the importance of training.They note that 13 countries teach compulsory palliative care to more than 50%of medical students and 9 do so with more than 50% of nursing students. In the vast majority of Western Europe, Palliative Medicine is recognized as a specialty, subspecialty or specific skill area.
Another noteworthy aspect refers to the legal frameworks developed to regulate palliative care provision: most countries have established legal frameworks for he provision of PC, with specific laws reported in eight countries and other laws or decree-laws present in 63% of the countries.  

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