The convalescence of the child in hospital is a delicate phase and often deeply suffered by the patient and family, during which no one should be left alone. In this regard, the Ministry of Health, on its website, reports that "in Italy 11,000 children (from 7,500 to 15,000) with incurable and/or terminal illness (1/3 oncological-2/3 non-oncological) need paediatric palliative care".
It is important to point out that paediatric palliative care is intended not only for the development and maintenance of vital functions, but also for "the maturation of the personality, the recognition of the self and others, the enhancement of individual peculiarities and talents; those committed to the growth of the person, his or her education, culture, creativity and spirituality and, finally, those useful for learning to live in the present while maintaining a space for future thinking ahead".
From the technical document entitled "Palliative care for newborn babies, children and adolescents", concluded in 2006, it emerges that, in order for the patient to achieve these objectives on a personal and social level, it is advisable "not to have broken the parental bond at any time during the care, to establish an empathic and personal relationship with professionals and operators who care for him/her" and, in conclusion, "to implement activities, mediated by the age and condition of the child, through play, the direct or indirect expression of creativity and experiences".
In order to improve the patient's quality of life it is, among other things, necessary:
- to enjoy school attendance, even at a distance and/or with individualized and dislocated activities, and to integrate it with any other feasible educational and cultural proposal;
- to be able to participate, with regard to age and condition presented, in social and recreational activities involving groups and peers, also through collaboration with active voluntary groups;
- to have the desired spiritual support available at the desired times and in the desired ways.
In the world of volunteering, in fact, the hospital sector certainly deserves attention and, in particular, the one aimed at patients under the age of eighteen.
There are many voluntary organisations whose mission is to bring smiles to the paediatric wards of Italian hospitals. Here are some of them:
ABIO Foundation - Association for the Child in Hospital
Since 1978 it has been working with children, adolescents and parents. It has 5,000 volunteers in more than 200 paediatrics wards, gathered in 61 ABIO Associations throughout Italy.
It has launched the "Hospital at the height of children" label, with which a special Commission assesses hospitals on the basis of: reception and support, children's, adolescents' and family members' rights, continuity of care and integration, specific care.
Italian Red Cross
Since 1864 it has provided, through various projects, an entertainment service for hospitalised children and relational support through the reading of fairy tales or drawing activities, not forgetting the educational aspect (e.g. hand washing techniques) and information for parents.
U.G.I. Onlus - Italian Parents Union
Since 1980 at the Regina Children's Hospital in Turin, it has been offering parents of children with cancer support in their treatment and children play and educational activities.
Friends of the Sick Child ONLUS
Since 2009 in Milan, since 2017 in Umbria and since 2019 in Emilia-Romagna, it provides tools and know-how in the diagnosis and treatment of childhood and adolescent diseases.
Association of Parents and Friends of the Leukaemic Child
Since 1982 it has been offering an integrated system of Houses Accommodation to accommodate those who are in financial difficulties and cannot afford a housing solution in Pavia for free.
Association of Italian Paediatric Hospitals
Since 2005 it has been promoting the cultural, scientific and managerial development of high specialty care facilities dedicated to the maternal-children and developmental age.
Doctor smile ONLUS
Since 1995 he has been promoting clowtherapy in Italy.
Since 2005 it has been providing housing solutions in Turin for children and families suffering from the disease.
It should be noted that, as a rule, most hospital voluntary organisations operate at regional and territorial level, in collaboration with individual local hospitals. It is no coincidence that in 2008 the Technical Document on paediatric palliative care was approved at the State-Regions Conference, which guarantees the creation of paediatric palliative care networks in all Regions.
However, the above mentioned are only some of the voluntary organisations present in Italy, further examples are AMICI DELLA PEDIATRIA Onlus Association (Bergamo), Associazione Giocamico Onlus (Parma), Associazione Bambino Gesù Onlus (Rome), Chi ama la Sicilia (Palermo) and many others.
The State recognises a fundamental role for these organisations, so much so that the framework law on hospital voluntary work no. 266 of 1991 states in art. 1 that "the Italian Republic recognises the social value and function of voluntary work as an expression of participation, solidarity and pluralism, promotes its development while safeguarding its autonomy and promotes its original contribution to the achievement of the social, civil and cultural aims identified by the State, the Regions, the autonomous provinces of Trento and Bolzano and the local authorities".
Moreover, with Legislative Decree 460 of 1997, it was established that non-commercial organisations (ONLUS, APS, Volunteering) should enjoy favourable fiscal discipline.
However, in the last year the spread of the SARS-CoV-2 virus and the restrictive measures adopted by the Italian government to limit it have forced hospital voluntary organisations to resort exclusively to social media in their relations with patients and families, while waiting for the desired return to normality.
Translated by Francesca Cioffi
Original version by Rebecca Scaglia