Information des familles des patients recevant une ventilation à domicile

Abstract

Domiciliary ventilation involves the establishment of a network of hospital and community based medical and paramedical carers, together with the technical support of the apparatus. Within this network the family form a pivot and their education should therefore be integrated into the setting up and maintenance of all cases of domiciliary ventilation. Currently this education is neither formalised nor the object of any consensus (with the exception of paediatric departments who, for the most part, provide training for the family, in partnership with the home care provider, in the hospital environment, before a ventilated child is returned home). Most commonly the information packages, medical and technical, are distributed by the various contributors without coordination or validation. The family find themselves in the midst of a network within which they do not understand the role of each member and therefore risk being unable to find the information or knowledge that they may need. Domiciliary ventilation, particularly non-invasive ventilation, is increasing and the main role of the family, which should be regarded in the broadest sense as everyone involved in the daily activities of the home, is to help the patient accept a treatment that is restricting in the long term. Their education should be integrated, as with the therapeutic education of the patient, into an educational project with objectives, learning tools, and validation of the knowledge acquired. This project should be result of co-operation between all the members of the care network and lead to the production supportive documentation. Better education of families should lead to a reduction, or better still prevention, of the incidents that are inherent in the use of assisted ventilation equipment and improve the quality of life of the patient and his family in a secure environment.