title: [Life quality of patients with muscular failure, using permanent respiratory support, seen from their point of view. 2. Practical requirements and problems connected with respirator treatment].
abstract: Sixteen patients with neuromuscular disease receiving long-term assisted ventilation participated in a combined questionnaire/interview investigation with the purpose of illustrating their situation as regards appropriate personal attention, technical aids, knowledge of respirator-technique, illness and regular hospital examinations, multidisciplinary conferences, adapted housing and speech problems connected with tracheostomy. Generally, we conclude that these practical factors and arrangements, enabling the patient to manage everyday life, were, on the whole, satisfactorily settled. Compliance with the patient's desires to the utmost extent is recommended and achievement of the optimal solutions for him, by means of teamwork. Thus one must always bear in mind that the goal of these practical arrangements for the patient (such as personal attention, technical assistance, hospital examinations etc.) apart from optimal maintenance of daily activities should be to keep the patient independent of residential care.
authors.affiliation: Muskelsvindfonden, Arhus C.
authors.forename: E
authors.initials: E
authors.lastname: Jørs
authors.forename: B
authors.initials: B
authors.lastname: Steffensen
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D006801:Humans; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000451:nursing / Q000523:psychology / Q000628:therapy*; D012121:Respiration, Artificial / Q000379:methods / Q000451:nursing / Q000523:psychology; D011795:Surveys and Questionnaires; D014139:Tracheostomy / Q000379:methods / Q000451:nursing / Q000523:psychology
vernacular_title: Tilvaerelsen for permanente respiratorbrugere med muskelsvind, set med brugerøjne. 2. Praktiske krav og problemer i forbindelse med respiratorbehandling.