Proiectul este derulat de Asociația Lumina în parteneriat cu Foreningen for barnepalliasion FFB cu sprijinul financiar Active Citizens Fund Romania, program finanțat de Islanda, Liechtenstein și Norvegia prin Granturile SEE 2014-2021. urmărește să realizeze demersurile necesare pentru a pune pe agenda publică la nivel național îngrijirea paliativă pediatrică care să contribuie la asigurarea accesu
lui echitabil la servicii de sănătate pentru copii diagnosticați cu afecțiuni limitatoare de viață sau boli incurabile. Asociatia Lumina desfasoara activitati de ingrijiri paliative de peste 10 ani ceea ce ne-a permis sa intelegem care sunt nevoile acestui domeniu de activitate si modul in care am putea sa contribuim la dezvoltarea sa. Experienta acumulata ne-a demonstrat ca ingrijirile paliative pediatrice sunt ”cenusareasa” sistemului medical: nu exista date despre numarul de copii care sufera de boli incurabile, nu se stie tipul de afectiune, stadiul bolii, tipul de servicii de care beneficiaza sau ar avea nevoie copilul, specialistii care trebuie sa acorde sprijin, nu dispun de ghiduri, protocoale clinice care sa le imbunatateasca activitatea astfel incat interventia lor sa fie una cat mai adecvata nevoilor celor pe care ii au in grija. Prin proiect ne propunem sa raspundem celor doua probleme identificate: cartografierea la nivel national a copiilor care sufera de boli incurabile si crearea de ghiduri, protocoale clinice specifice ingrijirii paliative pediatrice. Pentru fiecare dintre cele doua probleme am prevazut in echipa de proiect specialisti cu experienta in culegerea de date, specialisti din strainatate (Norvegia) si din tara. Echipa multidisciplinara care va lucra in acest proiect va colabora in activitati de realizare a bazei de date cu copii care se confrunta cu boli incurabile, in identificarea nevoilor familiilor acestor copii si ale personalului care furnizeaza ingrijiri paliative. De asemenea, cu sprijinul partenerului norvegian precum si membri ai familiilor care au in intretinere copii cu boli incurabile vom desfasura activitati de elaborare a ghidurilor si protocoalelor clinice specifice pentru ingrijirea paliativa pediatrica. Rezultatele principale ale proiectului vor avea impact national si vor consta in baze de date privind situatia actuala a copiilor care sufera de boli incurabile, ghiduri si protocoale clinice specifice ingrijirii paliative pediatrice, actiuni de advocacy menite sa contribuie la constientizarea acestei problematici. Proiectul este derulat de Asociația Lumina în parteneriat cu Foreningen for barnepalliasion FFB cu sprijinul financiar Active Citizens Fund Romania, program finanțat de Islanda, Liechtenstein și Norvegia prin Granturile SEE 2014-2021.
Lucrăm împreună pentru o Europă verde, competitivă și incluzivă
www.sivoceameaconteaza.ro
The project My voice matters! aims to take the necessary steps to put pediatric palliative care on the national public agenda to help ensure equitable access to health services for children diagnosed with life-limiting conditions or incurable diseases. The Light Association has been carrying out palliative care activities for over 10 years, which allowed us to understand what the needs of this field of activity are and how we could contribute to its development. Experience has shown us that pediatric palliative care is "ashes" of the medical system: there are no data on the number of children suffering from ncurable diseases, the type of illness, the stage of the disease, the type of services they benefit or need. the child, the specialists who must provide support, do not have guides, clinical protocols to improve their activity so that their intervention is as appropriate to the needs of those in their care. Through the project we aim to answer the two problems identified: national mapping of children suffering from incurable diseases and the creation of guides, clinical protocols specific to pediatric palliative care. For each of the two problems we have provided in the project team specialists with experience in data collection, specialists from abroad (Norway) and from the country. The multidisciplinary team that will work on this project will collaborate in activities to create the database with children facing incurable diseases, in identifying the needs of the families of these children and of the staff providing palliative care. Also, with the support of the Norwegian partner as well as members of families who care for children with incurable diseases, we will carry out activities to develop specific clinical guides and protocols for pediatric palliative care. The main results of the project will have national impact and will consist of databases on the current situation of children suffering from incurable diseases, guidelines and clinical protocols specific to pediatric palliative care, advocacy actions aimed at helping to raise awareness of this problem and its inclusion in all national strategies regarding health in Romania. www.sivoceameaconteaza.ro
The project is implemented by Asociatia Lumina in partnership with Foreningen for barnepalliasion FFB with financial support of Active Citizens Fund Romania, programme funded by Iceland, Liehtenstein and Norway through the EEA Grants 2014-2021. The content of this page does not necessarily reflect the official position of the EEA and Norway Grants 2014-2021; for more information visit www.eeagrants.org
