Los cuidados paliativos: un modelo de atención integral al niño gravemente enfermo y a su familia

Salas Arrambide, M.; Gabaldón Poc, O.; Mayoral Miravete, J.L.; González Pérez-Yarza, E.; Amayra Caro, I.

doi:10.1016/S1695-4033(04)78397-6

Anales de Pediatría (English Edition)

ISSN: 2341-2879

The Spanish Pediatric Association (Asociación Española de Pediatría, AEP) has as one of its main objectives the dissemination of rigorous and up-to-date scientific information on the various areas of pediatrics. Annals of Pediatrics is an open access journal that serves as the Association's Scientific Expression Organ and constitutes the vehicle through which members communicate. Annals of Pediatrics publishes, in English and Spanish, original research papers on pediatrics, as well as review articles prepared by experts in each specialty, and guidelines or positioning documents prepared by the different Societies/Specialized Sections integrated into the Spanish Pediatric Association. The journal, a reference for Spanish-speaking pediatrics, is indexed in the most important international databases: Index Medicus/Medline IBECS, IME, SCOPUS, Science Citation Index Expanded, Journal Citations Report, Embase/Excerpta Medica, Directory of Open Access Journals (DOAJ).

Indexed in:

Index Medicus/Medline IBECS, IME, SCOPUS, Science Citation Index Expanded, Journal Citations Report, Embase/Excerpta Medica, Directory of Open Access Journals (DOAJ)

En este artículo se exponen aspectos como la importancia de las actitudes del personal sanitario ante la muerte y la enfermedad grave del niño, las diferentes trayectorias de la muerte pediátrica, las razones por las que niños con enfermedades que amenazan su vida y sus familias sufren y las características que hacen de los cuidados paliativos un desafío para niños, familias, personal sanitario y la sociedad. Se definen los conceptos de cuidados paliativos pediátricos y se describen diferentes enfoques, además de exponer los principios universales de estos servicios. Se presta especial atención a los modelos que apoyan el inicio de los cuidados paliativos en el diagnóstico de la enfermedad grave, que no requieren un pronóstico de vida a corto plazo, y que no excluyen tratamientos curativos o que prolonguen la vida, ya que estos enfoques pueden beneficiar a los niños que sobreviven condiciones médicas graves, así como a los que fallecen y sus familias. Se propone la necesidad de ciertos cambios mediante educación e investigación para mejorar la calidad de vida de niños y las familias que actualmente sufren, la satisfacción y cohesión del personal sanitario y la calidad de los servicios asistenciales

Palabras clave:

Niño

Adolescente

Cuidados paliativos

Hospital pediátrico

Actitudes hacia la muerte

Calidad de la atención sanitaria

The present article reviews aspects unique to pediatric palliative care: the attitudes of medical staff toward pediatric death and life-threatening conditions, distinct patterns of pediatric deaths, the causes of suffering in children with life-threatening conditions and their families, and the features that make palliative care a challenge for children, families, medical staff and society. Concepts of pediatric palliative care and various approaches are described. In addition, Universal Principles of Pediatric Palliative Care are presented. Special attention is paid to approaches that start palliative care at diagnosis of a life-threatening conditions, do not require a short-term life prognosis and do not exclude curative or life-prolonging therapies since these approaches can benefit both children who survive life-threatening conditions and those who die, as well as their families. The need for certain changes through education and research is proposed to improve the quality of life of children and families who currently suffer, satisfaction and cohesion among medical staff, and healthcare quality

Key words:

Child

Adolescent

Palliative care

Pediatric hospital

Attitude to death

Healthcare quality

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