Problemi non correnti
Neonati e bambini “incurabili” e cure palliative
PALLIATIVE CARE FOR NEWBORNS AND CHILDREN
FRANCA BENINI, ANNA FERRANTE*, PAOLA FACCHIN*
Centro Regionale Veneto di Terapia Antalgica e Cure Palliative Pediatriche, Dipartimento di Pediatria, Università di Padova
*Osservatorio Regionale Veneto della Patologia in età pediatrica, Dipartimento di Pediatria, Università di Padova
Settembre 2007 - pagg. 449 -452
Abstract
Children suffering from terminal disease, as well as their families, show complex and peculiar needs. They require competent, organised and continuous support from a team of paediatric palliative care. WHO defines paediatric palliative care as the active global care of body, mind and soul of children, encompassing the active support to their families. Its objective is the quality of life of the little patient and his family. In Italy there are 11,000-12,000 children suffering from incurable diseases, of whom 1,100-1,200 die every year. Up to now, the assistance to these patients is mostly given in hospitals, especially in intensive care departments. There are few pilot experiences on paediatric palliative care in Italy. The assistance models studied at national and international level are essentially two: residential (with hospitalization in paediatric hospices or intensive care departments) and domiciliary (domiciliary hospitalization with integrated assistance). None of these models alone is optimal. A joint utilisation of the two assistance models is auspicable and can better meet the needs of the child according to his clinical evolution. Training, research and organisation are the necessary pillars to face such a complex problem.
Parole chiave
Suggerite dall'AI
Classificazione MeSH
Bibliografia
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2. Goldman A, Hain R, Liben S. Oxford Textbook of Palliative Care for Children. New York: Oxford University Press, 2006.
3. Graig F, Abu-Saad H, Benini F, Kuttner L, Wood C, Zernikow B. IMPaCCT: standars for paediatric palliative care in Europe. EJPC 2007;14 (3):109-14.
4. American Academy of Pediatrics. Palliative care for children. Pediatrics 2000;106:351-7.
5. When children die: improving palliative and end of life care for children and their families. Institute of Medicine of the National Academies, 2003.
6. Goldman A. ABC of palliative care: special problems of children. Br Med J 1998;316:49- 52.
7. Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT) and the Royal College of Paediatrics and Child Heath (RCPCH). Bristol, UK, 2003.
8. Department of Health and Children. A Palliative care needs assessment for Children. Stationery Office: Dublin, 2005.
9. Department of Health and Children. Report of the National Advisory Committee on Palliative Care, Stationery Office: Dublin, 2001.
10. McCallum D E, Byrne P, Bruera E. How children die in hospital. J Pain Syntom Manage 2000;20:417-32.
11. Maguire H. Assessment of Need Of Life-limited Children in Northern Ireland. Northern Ireland Hospice Children’s Service: Belfast, 2000.
12. Soutter J, Bond S, Craft A. Families of Misfortune: Proposed strategy in the Northern Region for the care of children with life threatening illnesses, and their families, Department of Child health and centre for Health Services Research, University of Newcastle upon Tyne, 1994.
13. Breau LM, Camfield CS, McGrath PJ, Finley GA. The incidence of pain in children with severe cognitive impairments. Arch Pediatr Adolesc Med 2003;157:1219-26.
14. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000;342:326-33.
15. Zernikow B, Schiessl C, Wamsler C, et al. Practical pain control in pediatric oncology. Recommendations of the German Society of Pediatric Oncology and Hematology, the German Association for the Study of Pain, the German Society of Palliative Care, and the Vodafone Institute of Children’s Pain Therapy and Palliative Care. Schmerz 2006;20:24-39.
16. A guide to the development of children’s palliative care services. London: Association for Children with Life Threatening or Terminal Conditions and their Families, Royal College of Paediatrics and Child Health, 2003.
Corrispondenza: benini@pediatria.unipd.it