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Parents providing palliative care for children with life-limiting diseases spent an average of nine hours a day caring for them each day and had to maintain an average of five medical appliances.
Background
Pediatric palliative care (PPC) addresses the physical and psychological needs of children suffering from life-limiting diseases. To define prevention and educational plans and to properly allocate resources, a precise estimation of the PPC burden is required.
Objectives
To estimate the current number of children requiring PPC in Italy, useful to assist policy-makers and healthcare bodies in the organization and allocation of PPC resources.
Methods
Literature data, The Global Atlas of Palliative Care at the End of Life and Italian national databases have been consulted.
Results
According to our estimation, at present, a total of 20,540–32,864 children in Italy require PPC (34–54 children/100,000 inhabitants) of whom 18 children/100,000 inhabitants require specialized PPC.
Conclusions
The present work is a fundamental tool to be used by the institutions, the local networks of PPC and the health programmers when formulating organizational models and care plans consistent with the actual need for PPC.
Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care (PPC) network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region (Italy). The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum.
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