The “Children Project”: Development of the Paediatric Palliative Care Networks in 3 Italian Regions
Project location: ITALY
Project start date: January 2013 - Project end date: March 2014
Project number: 2012-108
Beneficiary: Fondazione Maruzza Lefebvre D’Ovidio Onlus
Following the introduction of Italian legislation n.38/2010 stipulating the creation of regional dedicated palliative care networks for children affected by incurable illness. The primary objective of this project is to support the development, of child-specific palliative care networks in 3 Italian regions (Marche, Lazio and Basilicata). The project goals are achieved through a sequence of steps:
the creation of partnerships and cooperation agreements with regional authorities in order to:
- establish specific regional needs;
- recommend operational activities;
encourage the formation of interdisciplinary care teams, through the organization of paediatric palliative care training initiatives for medical professionals working with critically ill children in the different regions;
assist the organization of paediatric palliative care services by providing financial support for medical professionals working with the homecare teams.
Activities implemented and results obtained
Partnerships and cooperation agreements
Following the Foundation's continued activities aimed at achieving the project's objectives; meetings with regional healthcare policymakers and planners, negotiation with the principal children's hospital in Rome, the definition of PPC needs in the region and a detailed definition of the network's operational activities and resources. The Lazio regional Government finally deliberated, with the decree U00169 of the 22nd May 2014, the recognition of the Bambino Gesù Children's Hospital in Rome as the Regional Centre of Excellence for PPC and pain management in the Lazio Region.
On the 6th June 2014, the Maruzza Foundation renewed the Memorandum of Understanding with the Bambino Gesù Children's Hospital in Rome for the development of the regional PPC and pain management network.
In the Basilicata Region where progress has been more rapid and a positive and continuous dialogue has been established with the regional and local healthcare authorities. During in a meeting with the Regional Government on the 5th May 2014, the President communicated that an area in the town of Lauria had been identified for construction the Basilicata Regional Centre of Excellence and Children's hospice, for which € 2 million have been allocated by the Basilicata Regional Government.
The Marche Regional project is also progressing very rapidly, thanks to the support of the local Maruzza Association. Following the approval of the technical document stipulating criteria for the institution of a PPC and pain management network in the region by the Marche Regional Council on the 6th May 2014. The Marche Regional Maruzza Association, in cooperation with the Maruzza Foundation, have committed to raising awareness among the general public of the significance of PPC and to the specialised training of medical professionals working with children with incurable illness.
Paediatric palliative care training initiatives
During the 1st semester 2014, to guarantee a uniformity in PPC/pain management training of health care professionals working with critically ill children, the Maruzza Foundation, in collaboration with the Italian Palliative Care Society, devised a ‘Core Curriculum' for the professional figures composing the specialised multidisciplinary care team: physicians, psychologists and nurses, as specified in the legislation 38/2010 and consequent operational decrees. The Maruzza Foundation called upon 30 PPC experts operating throughout Italy (12 physicians, 9 nurses, 8 psychologists and a delegate from the Italian Ministry of Health) to define the timing, methodology, skills and knowledge required for an adequate preparation of professional working in PPC and pain management. The final document, currently in publication, will be officially presented during the 2014 National Congress of the Italian Palliative Care Society in October 2014. This core curriculum will be the basis for the development of PPC /pain management training in all the Italian Regions.
For training/awareness purposes and to sensitize caregivers to the issues linked to the loss of children to incurable illness, the Maruzza Foundation has realised a sort video describing the experiences of bereaved parents who have lost children and who have received bereavement support from Prof. Angela Guarino (Consultant Psychologist and Bereavement Councillor) and her team from the Sapienza University in Rome.
Between the 3rd May and the 26th June 2014, at Fano in the Marche Region, the Maruzza Foundation and the regional Maruzza Association organized 4 modules of the skills training course entitled "Formazione Efficace" ("Effective Training") (http://www.youtube.com/watch?v=JxSYczBPaEs) for volunteers and professionals caring for children with incurable illness.
In the Lazio Region, following the ruling of the Regional Government (decree U00169 of the 22nd May 2014) recognizing the Bambin Gesù Children's Hospital as the Regional Centre of Excellence for PPC and pain management in the Lazio region, in collaboration with the Rome City Council, an appropriate structure for the seat of the region's children's hospice has now been identified. Consequently, on the 6th June 2014 the Maruzza Foundation renewed the Memorandum of Understanding with the Bambino Gesù Children's Hospital to support the development of the PPC and pain management services network in the region (the document is visible, in Italian, upon request). Conjoint activities are on-going.
In the Basilicata region, to support the activities of the pain management and paediatric palliative home-care network, the Maruzza Foundation has funded the salaries of a Paediatrician and a specialised Nurse employed by the Regional Health Authorities,
In the Marche Region, the Foundation continues to work closely with the local Maruzza Association to develop strategies and to stimulate the realization of the PPC /pain management network.
3.3 Anticipation of the next steps and expected results
In the Lazio Region, the Maruzza Foundation will continue to work in close collaboration with the Bambino Gesù Children's Hospital to facilitate the development of the regional PPC/pain management network and realization of the Children's hospice in Rome by providing expert PPC know-how, developing specific fundraising strategies and providing skills training for the members of the multidisciplinary care teams.
The Maruzza Foundation will continue to provide bereavement counseling for a group of parents coping with the incurable illness or the death of a child.
In the Marche Region, the Maruzza Foundation, in alliance with the regional Maruzza Association, will programme a series of on-going training initiatives for the 2015 period.
In Basilicata, the Maruzza Foundation's will continue to support the two professionals working for the PPC and pain management network. Thanks to this contribution, the home care network will be broadened to accommodate the needs of many more children with incurable illness currently without access to adequate services in the Basilicata Region. In collaboration with the Regional Maruzza Association, a series of training initiatives will be organized in the region during 2015 and a fundraising strategy for the regional center of excellence/children' s hospice in Lauria will also be developed.
In the future, following and the excellent results achieved in the various pilot regions, the Maruzza Foundation intends to build on the experience matured during the past 18 months to broaden the project to include other Regional Health Authorities. Currently, a further regional Maruzza Association has been created in the Friuli Venezia Giulia Region and a Memorandum of Understanding has been signed with the Giannina Gaslini Children's Hospital in Genoa for the realization of the regional PPC/Pain Management network and Children's Hospice for the Liguria Region. Furthermore, the Calabrian and Sardinian Regional Health Authorities have contacted the Maruzza Foundation for the organization of specialized PPC/ Pain Management training in anticipation of the development of dedicated PPC service networks and children's hospices in the different regions.