TRENTO. That Guided tour of Italy for pediatric palliative care organized by the Maruzza Foundation to raise public awareness, disseminate accurate and reliable information, dispel myths and taboos on pediatric incurable disease, build a common culture of palliative care in children, and work to ensure the rights recognized by law 38/2010 transformed into concrete actions, aimed at improving the lives of families and minors burdened by incurable diseases.
In detail, the Trentino scene, which sees the collaboration and sponsorship of the Hospice Trentino Onlus Foundation, the Onlus Campo Base Association and UISP – Trento, as well as the province, Trento Municipality and Healthcare Company, will be on Sunday 19 June under the banner of games and activities in the yard of Francesco Crispi Elementary School dand via San Giovanni Bosco and Trento. From kl. 17.00 to 23.00, a “Handmade Luna Park” managed by Associazione Campo Base and there will be the opportunity to engage in inclusive sports activities together with the UISP from Trento. In the evening there was room for “CicloCinema”, with the showing of the animated film “Encanto”; the vision will take place using 10 cycles on rollers that activate the dynamo and produce the necessary energy for the projection.
In the world there are 22 million and in Italy 30,000 minors (0-17 years) who need Pediatric Palliative Care (CPP). The pathologies most commonly affecting these minors are: irreversible organ failure, cystic fibrosis, metabolic and neurological degenerative diseases, chromosomal and genetic pathologies; severe cerebral palsy, disability due to sequelae of brain and / or spinal cord injury. Cancer represents only 15% of children eligible for pediatric palliative care, even though they have the easiest access to it.
Pediatric Palliative Care deals with a wide range of pathologies, many of which are rare or undiagnosed, the specific nature of which determines the type of care project for the individual patient and for his or her family. A multidimensional approach to the minor’s needs alleviates suffering, pain and other symptoms, taking into account the psycho-emotional state and the problems related to the social, cultural and spiritual spheres, providing quality of life on the sometimes very long road that it spans from diagnosis. incurable and irreversibility to the advanced and terminal stages of the disease.
The project envisages the realization of a national communication campaign linked to initiatives and activities spread at regional level of a sporting, scientific, institutional, cultural and recreational nature. The idea – born of the commitment of over 190 volunteers who join the informal network “In Love with the CPP”, composed mainly of socio-health professionals working in the field – led to the launch and promotion of the National Manifesto for CPPs, to be made known and to subscribe to the citizens, to give them correct information about what pediatric palliative care is and what it is for.
Maruzza Lefebvre D’Ovidio Onlus Foundation: has for over 20 years been involved in promoting knowledge about pediatric palliative care at national and international level through education, advocacy and communication activities both with specific target groups (politicians / health professionals, volunteers, etc.) … ) and among the general public. He will act as coordinator of the Giro d’Italia and national rapporteur for the initiative.
Informal network “In love with pediatric palliative care”: that is the heart of this proposal and the engine behind the idea of the “Giro di Italia delle CPP”. It is a group of doctors, nurses and other socio-health professionals, gathered in an informal self-constituted network by 2020, which has over 190 active volunteers coming from all over Italy.
Contrary to many people’s beliefs, pediatric palliative care should certainly not be referred to the terminal period onlythey are a true and proper care of the minorand his family from diagnosis and throughout the duration of the disease – comments Commissioner Stefania Segnana – to improve the quality of life for children, adolescents and young people as much as possible.
Then it is important to emphasize – the Commissioner adds that in Trentino, a real network of pediatric palliative care has been active for several years in the Healthcare Company: thanks to the hospital / area integration, the interaction with the palliative care network for adults and the involvement we are able to follow both pediatricians of free choice and general practitioners about 70% of “eligible” minors compared to less than 10% in the rest of Italy. Of course we can do more, especially in terms of raising awareness among our citizens, in that sense the Giro d’Italia of Pediatric Palliative Care – concludes Councilor Segnana – a really good initiative that we support, for the quality our minors with very complex care diseases ».