TY - CHAP
T1 - Lisu
T2 - Limiti superabili. Indagine sulla qualità di vita delle persone con sindrome di down nel comune di roma riflessioni su un censimento
AU - Luchino, Flavia
AU - Bertoli, Marta
AU - Calignano, Maria Teresa
AU - Celani, Giampaolo
AU - de Grossi, Giuseppina
AU - Digilio, Maria Cristina
AU - Fermariello, Carla
AU - Iraci, Giulio
AU - Loffredo, Gianfranco
AU - Marchese, Anna
AU - Mazotti, Stefania
AU - Pierannunzio, Daniela
AU - Menghi, Barbara
AU - Razzano, Enzo
AU - Tiano, Carlo
AU - Volpe, Rita
AU - Zambon, Anna Serena
AU - Zampino, Giuseppe
PY - 2009
Y1 - 2009
N2 - Background Population based surveys on quality of life for people with Down syndrome resident in the City of Rome Background Population based surveys on quality of life for people with Down syndrome (DS) are difficult to be realized because of case detection and privacy restrictions, but they are needed for service organization. Methods Data on medical and social conditions of 518 people with DS resident in the City of Rome, were collected through a population-based research. Family-doctors of National Health Service have been involved and families-reported questionnaires have been collected. Results and conclusion There is evidence of wide unmet needs. Excellent results reached by some persons with DS have great visibility on the media, but disinformation can result about the real needs of the majority. A kind of re-appraisal on the human right to be peacefully different without the duty to be excellente, in order to be visible, is required.
AB - Background Population based surveys on quality of life for people with Down syndrome resident in the City of Rome Background Population based surveys on quality of life for people with Down syndrome (DS) are difficult to be realized because of case detection and privacy restrictions, but they are needed for service organization. Methods Data on medical and social conditions of 518 people with DS resident in the City of Rome, were collected through a population-based research. Family-doctors of National Health Service have been involved and families-reported questionnaires have been collected. Results and conclusion There is evidence of wide unmet needs. Excellent results reached by some persons with DS have great visibility on the media, but disinformation can result about the real needs of the majority. A kind of re-appraisal on the human right to be peacefully different without the duty to be excellente, in order to be visible, is required.
KW - Disability
KW - Down syndrome
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=72249101252&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=72249101252&partnerID=8YFLogxK
M3 - Capitolo
AN - SCOPUS:72249101252
VL - 16
SP - 194
EP - 202
BT - Quaderni ACP
ER -