Cuidados al final de la vida en la unidad de cuidados intensivos pediátricos. Empleo de técnicas de investigación cualitativa para el análisis del afrontamiento de la muerte y situaciones críticas / End-of-life care in the pediatric intensive care unit. Use of qualitative research techniques for analyzing coping with death and critical situations

RESUMEN

Fundamento En la última década, se aprecia un creciente interés por los aspectos más humanos de la enfermedad que se traduce en un acercamiento a la familia y a su sufrimiento. Objetivo: Conocer en profundidad la experiencia de los profesionales y de los padres de niños ingresados en la unidad de cuidados intensivos pediátricos (UCIP). Material y métodos: Se organizaron grupos focales (GF) de padres de hijos fallecidos o con secuelas graves ingresados en la UCIP los años 1999-2002. Asimismo, se desarrollaron reuniones de GF de profesionales. Se revisó desde el ingreso hasta la muerte y el seguimiento del duelo. Se recogieron las inquietudes y las necesidades expresadas por el personal sanitario. Resultados: Se contactó con 133 familias (40% de hijos fallecidos y 60% de hijos con secuelas), de los que acudieron un 75% y un 44%, respectivamente. Las madres acudieron más (61%) en el caso de fallecidos, y las parejas (51%), en el caso de niños con secuelas. Asimismo, se organizaron GF con 22 personas (5 médicos, 11 enfermeras y 5 auxiliares de enfermería). Se recogieron los principales problemas, discrepancias y soluciones. Se instauraron medidas de mejora acordes con la información recibida. Conclusiones: La aplicación de GF ha permitido el acercamiento a las necesidades y problemas más importantes de los padres de niños que ingresan en la UCIP, así como de los profesionales. Esta información ha facilitado la implantación de medidas de mejora de una forma realista y ajustada a estas necesidades

ABSTRACT

Background: In the last 10 years, there has been increasing concern for a more human approach to illness, which has led to a better understanding of families and their suffering. Objective: To gain greater insight into the experience of the parents of children admitted to the PICU and of the health workers in these units. Material and methods: Focus groups (FG) composed of parents with children who had died or who were having serious sequels were organized in the PICU from 1999-2002. Likewise, FG meetings with health professionals were set up. The period from admission to death and support for grieving families were reviewed. At the same time, the concerns and needs mentioned by health professionals were collected. Results: A total of 133 families were contacted by surface mail (40% had children who had died and 60% had children with sequels who survived); of these, 75% of the families in the first group and 44% of those in the second group attended the FG. Attendance by mothers (61%) was more frequent in the case of death, and attendance by couples (51%) was more frequent in children with sequels. Focus groups were organized with 22 health professionals (five physicians, 11 nurses and five nurses' aids). The main problems, discrepancies and solutions identified by the distinct groups were recorded. Improvement measures were implemented according to the available information. Conclusions: The use of FG allowed us to approach to the most important needs and problems of parents with children admitted to the PICU, as well as those of the heath workers in the unit. This information allowed improvement measures adjusted to these needs to be implemented in a realistic manner