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Lazzarich C
Emanuele, 10 years old. Autonomy in daily life for a person with Duchenne Muscular Dystrophy
Editorial data: Portale SIVA Fondazione Don Carlo Gnocchi Onlus
Abstract: Emanuele is a child, aged 10, suffering from progressive muscular dystrophy type Duchenne. He lives with his mother, a physiotherapist, that until now has coordinated on her own all professional interventions (physicians, pediatric neurology, pulmonologist, cardiologist, orthopedic technicians, etc..), as a response to the needs of her son. Now Emanuele’s mother is no more able to manage the situation by herself, as it has turned more difficult. We intervened in order to try to support her, focusing on five major issues concerning the autonomy of her son: the power wheelchair, the renovation of the bathroom, the accessibility of the home garden, the environment control and accessibility to personal computer. For each topic a specific project was formulated, each identifying needs, objectives and expected results.
Year of publication: 2006
Type of document: Case studies/experiences
Last update: May 2016
Lazzarich C
“Sapere” aiuta, ma anche “chi sa” ha bisogno di aiuto. Il caso di Emanuele
Editorial data: Tesi Corso di Perfezionamento "Tecnologie per l'Autonomia". Università Cattolica Milano e Fondazione Don Gnocchi, a.a. 2005-2006
Abstract: (text automatically translated from Italian) Emanuele is a child 10 years old, that suffers from Muscular Dystrophy progressive ***Duchenne type; he lives with the mother, ***fisioterapista, than till now physiatrists have coordinated all the participations specialistics (, infantile, ***pneumologo ***neuropsichiatria, orthopedic cardiologist, technicians, etc) alone, estimating she of time in time the needs of its child and proposing she, to every control, the issues to face; hour the problematic ones have become greater, are for number that for importance, and the mother more does not succeed to manage them all alone (neither is right that the face) for which has been attempted to place side by side it and to support it in focusing and to face five great topics relatives to the independence of its child: the electronic wheelchair, the restructure of the house bath, accessibility of the house garden, the control environment and the access to the personal computer. For every topic it has been formulated a project articulated in four is made, ***dall' the identification of the need, to the formulation of an objective, the definition of a project until the realization of the project. The technical assessment has been precious for this mother how much accompanied having it to take action is of the emergent problems that of the urgency to face them, suggesting to solutions tu in the meanwhile understanding and respecting theirs “***modus vivendi”, theirs to feel emotional and the sense of loss that ***is subentrato with progressing of the disease.
Year of publication: 2006
Type of document: Thesis
Last update: December 2006
Info updated 30/03/2023 | Fondazione Don Carlo Gnocchi Onlus - P.IVA 12520870150 | E-mail: portale@siva.it