[Growing up on the intensive care unit. Results of a survey on quality of life of long-term ventilated children on intensive care units]

Abstract

Background: The situation of children treated with long-term ventilator assistance after tracheostomy and living in intensive-care units for an indefinite period of time has still been neglected in spite of its complex nature.

Patients and methods: Already in 1988 the Ministry for Employment, Public Health and Social Welfare of Nordrhein-Westfalen ascertained 51 children living in hospitals in Nordrhein-Westfalen for a long time. An inquiry of our hospital in 1994 comprising 32 children's hospitals in Westphalen-Lippe showed 14 patients at the age from 6 months to 16 years 9 months with mechanically ventilation and intensive care unit as their "living-space". Due the modern medico-technical development increasing of this form of life is expected.

Results: The survey shows that beyond medical care public assistance is insufficient. There are serious deficiencies in pedagogics and therapeutic accompaniment. The children's social contacts outwards are greatly reduced so that they neither get an adequate help during pre-school times nor at school age.

Conclusions: Considering the problems, physicians and educationalists of various hospitals in Datteln established the study group "Children and adolescents exposed to ventilation". This group is engaged in developing alternatives towards the accommodation in intensive care units. Major intensions are first to support parents in integrating their child within the family; second to create flat-sharing groups for children, whose parents are not able to integrate their child within the family.