Résumé :
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Patients commenced on long-term ventilation in our unit undertake a structured educational programme, including assessment of competencies, before they are discharged home. They are also given printed information to take with them. Over a twenty week period we interviewed a sample of our patients at home (n=49) to identify if any further training needs had emerged since discharge. Purposive sampling was used to prioritise patients requiring long periods of the day on ventilation, those with tracheostomies, complex clinical problems and all patients discharged from hospital during the project period. The most common diagnosis was neuromuscular muscle weakness (33%) with 70% using non-invasive ventilation at night only. 59% of patients understood correctly why they were using a ventilator, but only 50% were assessed as fully competent to look after their ventilators. Knowledge about ventilator alarms was poor. Most patients reported difficulties with interfaces. Only 29% knew how to respond appropriately to a variety of emergency scenarios (power cut, equipment failure, clinical deterioration etc). The main concerns of the patients were the effects of noise from ventilator and its alarms on their partner's sleep, fear of equipment breakdown and the difficulties of going on holiday. 46% of patients had support from professional carers at home. None of these carers had received formal competency based training on ventilation, and links between them and the specialist services in hospital were poor. A number of salaried but unqualified social carers were assisting with ventilation, but had only received their training from the patients themselves. 83% of patients said they would like more teaching. A group of key stakeholders (patients, carers and healthcare professionals) are currently developing three web-based training packages with the University of Nottingham. These Reusable Learning Objectives (RLOs) are small, interactive chunks of learning that the stakeholders feel are essential to support their care at home, which can easily be accessible on a website. Further educational material will also be provided on paper and DVD. We conclude that our patients need further training in ventilation once they leave hospital. This should be delivered in the patient's home by specialists using a variety of educational resources, and should be accessible by patient's carers, both professional and non-professional.
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