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Best Practice

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Document Typology: Real case
Target groups: Patients
country Where It Took Place: Italy
Name of compiler: Sabrina Grigolo
name of institution: Gradenigo Hospital
role: Project Manager
language Of The Description: English
title: Born well to grow better
description Of The Best Practice:
“The hard work of growing up: a plan for childhood” it’s the title of a competition proposed in 2003 by PAIDEIA Foundation, inspired by a research developed in the Turin area, around problems related to the life and development of children. Among more than 200 proposals, an innovative project entitled “Born well to grow better” presented by the CEPIM association has been identified by the Foundation Scientific Committee.
The main theme of this research, that is the communication of the diagnosis of disability at the moment of birth, has caused an immediate interest and a complete following among the specialists in charge of the selection.

This is not a positive or negative event in itself, if not in connection with the consequences that it determines: it’s clear that the birth of a disabled child is a traumatic, painful and senseless event for a family… a reality that founds health care professionals inadequate to face this specificity, starting from the moment where a health care professional has to face the problem of the communication of the diagnosis. It’s a matter of importance, since from this moment the possibilities for a disabled person and his family to know the “problem” properly, and the possible existing resources, are at stake.
The proposal was accepted with this motivation and this led to the creation of a challenging programme structured by various steps and modes of work: from the detection of how the information was enabled, the services map and opportunity offered by the territory. This research report, thanks to the competences and the professionalism of the CEPIM partners aims to give voice to parents that in their difficult experience have silently worked for their children, witnessing that integration means not only the use of a good practice but the intense and continuous wish of living in relation and communication with the world.
65% of the physicians interviewed state that the communication of the perinatal diagnosis falls within theirs brief but the procedure of doing that is almost never supported among ward colleagues by a cultural comparison and less supported by specific training moments. As for parents, they hope from the physician an “interested, helpful, professionally correct at the same time and possibly not embarrassed attitude” that make use of the collaboration of specialists having skills with regards to the specific kind of illness, sensitive to their suffering, contemporaneously being able of giving confidence as regard as the kind of illness. Moreover he should pay attention to the place where they meet together without showing hurried and dismissing attitudes. 63% of the parents interviewed state that they have not been helped to establish a satisfactory relationship with their child, if not only as for the health care need. The relation is not satisfactory because the future of these children is precarious, uncertain and not due to the limits of the hospital. Parents wish to receive a valid support in their parenting tasks.
Quality indicators:
Use of citizens narrative descriptions in order to improve the healthcare services
This experience allowed to start a review and meditation path in addition to an improvement of the relation between health care professional-family within the communication of the diagnosis of disability.
Life stories represent an important value in this context. They suggest ideas for meditation that go beyond numbers and statistical calculations.

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