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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.
Summary of project results
The project aimed to carry out the necessary steps in order to put pediatric palliative care on the public agenda at national level to contribute to ensuring fair access to health services for children diagnosed with life-limiting conditions or incurable diseases.
Concrete actions undertaken within the project included: 1. Project Coordination and Management: Ensuring the necessary conditions for project implementation. 2. Communication and Visibility: Organization of the launch and closing conferences, publication of 5 press releases, website creation, 6 Facebook posts, distribution of 1500 flyers, 500 brochures, 6 articles on the website, a banner, and a roll-up. 3. Research and Analysis: development of research methodology, application of questionnaires and interview guides and organization of 6 focus groups, drafting of quantitative and qualitative analysis reports. 4. Training and Expertise: Creation of expert working group. 5. Development of Clinical Guidelines: Agreement of 10 protocols and clinical guidelines, their actual creation and publication both online and in print (150 copies). 6. Creation of a Caregiver Support Network: Organization of 4 training sessions, a meeting with ANIP representatives and a round table, and an awareness campaign. 7. Team Implementation and Informing: Informing teams about the new clinical guidelines and protocols and their implementation in 195 diagnosed children. 8. Conferences: Organization of national IPP conference with 104 participants. 9. Optimization of IT Systems: Application of 2 questionnaires for initial assessment, purchase of IT equipment, signing of an IT service contract, and creation of an intranet system.
The project results had a significant impact on several target groups. Medico-social professionals benefited from standardized guidelines and protocols. Children diagnosed with life-limiting diseases received better-coordinated care. Caregivers had access to useful information and resources. The community was informed of the importance of pediatric palliative care through various communication channels.
Summary of bilateral results
The cooperation with the partner Foreningen For Barnepalliasjon FFB was a good one until the end of October 2022 when the organization received the news that it will no longer receives funding from the state and must close the activity. Between March 2022 and October 2022, the partner''s representative participated in the online meetings in order to create the guides and protocols related to the project, made available bibliographic sources that were the basis for the creation of their own guides/protocols and made a synthesis of the types of guides that they have.