Abstract

LLORENTE, Natalia; BERNADA, Mercedes; BELLORA, Raquel  and  BERNADA, Elena. Enfermedad de Werdnig Hoffman: desafíos del equipo de salud para el alta a domicilio Perspectiva de una unidad de cuidados paliativos pediátricos. Arch. Pediatr. Urug. [online]. 2013, vol.84, n.1, pp.39-43. ISSN 1688-1249.

Summary    We report the case of an 8-month-old infant with Werdnig Hoffman disease and breathing support through tracheostomy, during the preparation to be discharged home, from the perspective of a pediatric palliative care unit. The set of biological, social and family problems as well as the measures carried out during the hospitalization and the objectives in planning hospital discharge according to areas of care are described. Respite care as a means to prevent family claudication and the need of a meticulous articulation with the first level care team are highlighted. A national pediatric palliative care network (hospital, outpatient and home) is needed, as well as education and committed and articulated work of the different levels of care in order to ensure to all the children in need of it the palliative care assistance that the law states. 

Keywords : SPINAL MUSCULAR ATROPHIES      OF CHILDHOOD; PALLIATIVE CARE; PATIENT DISCHARGE; HOME CARE SERVICES .

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