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Description
The Light Association has been carrying out palliative care activities for over 10 years, which allowed them to understand what are the needs of this field and how they contribute to improve it. Their experience has showed them that pediatric palliative care is the „Cinderella” of the medical system: there are no data on the number of children suffering from incurable diseases, the type of illness, the stage of the disease, the type of services they benefit or need. Moreover, the specialists who must provide support, do not have guides, clinical protocols to improve their activity so that their intervention to be at its best for those in care.
The aim of the project is to tackle the identified problems through: mapping the children facing incurable diseases at natiomal level; creating guidlines and clinical protocols specific to pediatric palliative care.
The multidisciplinary team consisting of specialists with experience in data collection, national and international specialists from Norway will develop the database with children facing incurable diseases, will identify the needs of their families and of the staff providing palliative care. Also, with the support of the Norwegian partner, as well as members of families whith children with incurable diseases, will be developed specific clinical guidelines and protocols for pediatric palliative care.
The main results of the project will have national impact and will consist of creating databases on the current situation of children suffering from incurable diseases, guidelines and clinical protocols specific to pediatric palliative care, advocacy actions aimed at raising awareness on this problem and its inclusion in all national strategies regarding health in Romania.