[Parental perception of PICU end-of-life care and areas of improvement]

We developed a study to investigate how end-of-life care is delivered in our PICU. It was based on questionnaires. Questionnaires are incomplete tools to study perceptions. Knowing this, information was completed by interviewing some parents.

To know in depth the parental perception on potential improvements relating to end of life care in the PICU.

Long and probing interviews with parents of deceased children. Answers were analyzed through content analysis (qualitative methodology).

Eleven parents and/or mothers agreed to meet for an interview. They mentioned that end-of-life care may be improved in the following areas: information and communication, attention to families, death and after-death time, Unit organization, children care during admittance, and empathy from the staff.

It is possible to obtain information about end-of-life care by asking parents. Content analysis provides us with useful knowledge to face child death and improve care. The main areas to improve are related with family-centered care.