The “Children Project” in the Basilicata Region, Italy
Project location: Italy, Basilicata
Project start date: November 2015 -
Project end date: October 2016
Project number: 2015-037
Beneficiary: Fondazione Maruzza Lefebvre D’Ovidio Onlus
Project links:
Project Goals
The purpose of this project is to continue to support the development of the paediatric palliative care (PPC) and pain management service networks in the Basilicata Region. In 2008, the Foundation and the Basilicata Regional Authorities signed a Memorandum of Understanding aimed at the development and support of a palliative care and pain management network for children with serious illness living in the region.
The project foresees the continued development of the PPC services and homecare network through diverse activities:
1. The organization of specialised PPC training programs for professional and volunteer carer-givers.
2. Support for the organization of PPC services and the reconversion of existing buildings in Lauria for use as a children's hospice, for which the Basilicata Regional Authorities approved funding in June 2015.
Activities
From November 2015 to April 2016, the Maruzza Foundation supported PPC training activities by organising a specialised workshop, based on the "core curriculum", certified by the Italian Society of Palliative Care, aimed at healthcare staff working with critically ill children in the Region. On the 11th/12th February 2016 a two-day workshop was held in the capitol city of the region, Potenza.
The accredited training course, entitled “Cure Palliative Pediatriche: la sfida all’inguaribilità” saw the involvement of four expert physicians with extensive experience of PPC delivery:
· Franca Benini - Director of Paediatric Palliative Care - Consultant in Paediatric Pain and Palliative Care, University of Padua, Italy
· Momcilo Jankovic -Director of the paediatric haematology unit at the San Gerardo Hospital, Monza
· Luca Manfredini - Specialist in home care, paediatric palliative care and paediatric pain therapy at the Giannina Gaslini Children’s Hospital, Genoa
· Fabrizio Renzi - Specialist in Clinical Psychology and Psych-diagnostic, Senior Officer at the Center for Continuing Education of the Italian Armed Services.
The workshop provided basic PPC skills training for approximately 100 healthcare professionals and carers from across the region, covering topics such as: ‘clinical aspects’, ‘communication’ and ‘working with the multidisciplinary care team’.
During the same period the Maruzza Foundation continued to provide financial support for the regional homecare team consisting of two doctors and a specialised nurse working exclusively for this service. Furthermore, and a number of healthcare professionals (cardiologists, dentists etc.) were enrolled to provide voluntarily in-home support for seriously ill children and to supply medications, free of charge, to families in need. Also, a series of ‘mutual support groups’ were set up in the Region.
The Maruzza Foundation supported specialist consultancy provided by Franca Benini who is the Director of the only existing Italian children’s hospice in Padua, for the construction/reconversion project of the ‘Casa della Salute’ and the ‘Casa del Bambino’ for use as a Regional Children’s Hospice.
The Basilicata Regional Maruzza Association also recently signed a Memorandum of Understanding with the Rotary Club in Potenza, assigning office space for use by the association and foreseeing a series of cultural initiatives aimed at raising awareness of children’s palliative care needs in the area.
Results
For the period stretching from November 2015 until April 2016, the regional homecare team, supported by the Maruzza Foundation, provided essential PPC for more than 35 children and their families affected by serious, life-threatening illness.
Approximately 100 healthcare professionals and carers attended the training initiative organised at the beginning of the year by the Maruzza Foundation in Potenza, thus contributing significantly to improving the PPC skills of the healthcare staff working with the care teams in the region and, consequently, a huge improvement for the quality of life of the continually increasing population of seriously ill children and their families in need of dedicated palliative care services.
The Potenza Rotary Club, in collaboration with the Basilicata Regional Maruzza Association, organised two classical music concerts in Potenza and Venosa as awareness events for the development of children’s palliative care service networks.
The design and construction work for the reconversion of the buildings in the town of Lauria, destined to become the regions children’s hospice, are almost complete and the structure is scheduled to open by December 2016. This dedicated residential structure will guarantee that seriously ill children and their families in the region are cared for by highly qualified staff in a setting that fully meets their needs.
Activities
From May 2016 to October 2016, the Maruzza Foundation supported PPC training activities by organising a specialised workshop, based on the "core curriculum", certified by the Italian Society of Palliative Care, aimed at healthcare staff working with critically ill children in the Region. On the 23rd/24th September 2016, a two-day workshop was held in Rome.
The accredited training course, entitled “Basic Course in Children’s Palliative Care and Pain Management” saw the involvement of five experts with extensive experience in the provision of PPC and pain management:
- Dr. Franca Benini - Director of Paediatric Palliative Care - Consultant in Paediatric Pain and Palliative Care, University of Padua, Italy
- Ms. Piera Lazzarin - Nurse Manager - for the Veneto Regional Reference Centre for Paediatric Palliative Care and Pain Management in Padua.
- Prof. Dott. Marcello Orzalesi - Paediatrician-Neonatologist. Emeritus Professor of Neonatology at the University of Rome "La Sapienza" - Past President and Member of the Italian Paediatric Society’s Bioethics Committee - Scientific Coordinator of the Maruzza Foundation.
- Dr. Fabrizio Renzi - Medical doctor specialised in Clinical Psychology and Psycho-diagnostic, Senior Officer at the Center for Continuing Education of the Italian Armed Services in Clinical Psychology, expert in the design and conduction of management training courses.
-A Dr. Luciano Orsi - Palliative care practitioner and medical bioethicist. Emeritus Head of Palliative Care services, Carlo Poma Hospital Mantua
The workshop provided basic PPC and pain management skills training for approximately 30 healthcare professionals and carers from across the Basilicata region, covering topics such as: ‘Strategies for managing multi-problematic children and methods for supporting the child and family’, ‘communication’ and ‘Organizational aspects and legislation’.
During the same period, the Maruzza Foundation continued to provide financial support for the dedicated regional home-care team for about 40 children with serious illness (rare genetic disorders, neurological disease, birth complications and cancer) distributed throughout the province of Potenza, which covers approximately 6,000 km2.
Among other things, the activities of the care team included:
• home visits and telephone availability;
• multidisciplinary evaluation units;
• team meetings;
• liaison with hospitals, primary and secondary healthcare services;
· bereavement counselling for parents and families
The Maruzza Foundation continued to support specialist consultancy provided by Dr. Franca Benini who is the Director of the only existing children’s hospice in Italy, for the construction/reconversion project of the ‘Casa della Salute’ and the ‘Casa del Bambino’ for use as a Regional PPC and Pain Management Reference Centre and Children’s Hospice, Reconversion/renovation work was terminated in October and currently the call for tenders for the supply of medical equipment and furniture is underway. Dr. Benini also provided consultancy for the pain management and children’s palliative care service provision for the regional network and for the organization of the eligibility procedures for accessing the services.
Results
For the period covering May 2016 until October 2016, the regional homecare team, supported by the Maruzza Foundation, provided essential PPC for 43 children, and their families, living in the region and affected by serious illness and chronic conditions; rare genetic disorders, neurological disease, birth complications and cancer. Many of these babies, children and adolescents have profound cognitive impairment and functional disabilities that necessitate a high level of care, including prolonged mechanical ventilation and assisted feeding.
Approximately 30 healthcare professionals and carers attended the two-day training initiative organised at the Maruzza Foundation’s Headquarters in Rome on the 23rd and 24th of September, thus contributing significantly to improving the PPC skills of the healthcare staff working with the care teams in the Basilicata region and, consequently, a huge improvement in the quality of life of the continually increasing population of seriously ill children in need of dedicated palliative care services.
The design and construction work for the reconversion of the buildings in the town of Lauria designated to become the region reference centre for children’s palliative care and pain management were terminated at the end of October and the structure presented to the local health authorities the 16th of November 2016. This dedicated residential structure will provide specialised PPC and pain management for seriously ill children and their families living in the Basilicata region who will finally receive services delivered by highly qualified staff in a setting that is appropriate to their specific needs and age.
Next steps
In anticipation of the inauguration of the regional PPC and pain management reference center and children’s hospice, the Maruzza Foundation will be involved in the training and preparation of additional staff needed for the provision of services. Once the center is fully functional, it is foreseen that the PPC network will be extended to adjacent regions necessitating additional multidisciplinary care teams to provide in home family-centered care. The Maruzza Foundation intends to continue to support the activities of the multidisciplinary care teams and the expert consultancy of Dr. Benini for the organization and management of the regional network and children’s hospice.
