Paediatric Palliative Care and Pain Management Service, Department of Women's and Children's Health Padova University, Padua, Italy

After I’ve studied and trained in the Hospital-University of Padua, in 2005 I had my degree in nursing. I’ve been working in the Paediatric Palliative Care Centre in Padua since 2010 and before I’ve been in the Paediatric Intensive Care Unit for about four years. In 2009, I also became trainer for nursing university students education.

Thanks to Franca Benini, Piera Lazzarin and to the great team I am working with, I’ve discovered a different way to live the patients and their families and  began to consider the children's care from a more global perspective.

(1) Azienda Ospedaliera di Padova, Paediatric Palliative Care and Pain Management Service, Department of Women's and Children's Health Padova University, Padova, Italy, (2) Azienda Ospedaliera di Padova, Department of Nursing Education, Padova, Italy

Background: Parents caring at home for children with complex physical healthcare needs are subjected to both physical and emotional stress.In this study, the experiences of families caring for these children were examined from a temporal perspective.The aim of the study was to investigate the amount of time necessary to appropriately manage the child´s care needs.

Methods: The study population was the families of children with complex physical healthcare needs assisted by the Veneto Regional Paediatric Palliative Care Centre (VRPPCC) in Northern Italy.At the time of data collection, of the seventy-seven families registered under the regional paediatric palliative care programme, only thirty-three children met the inclusion criteria and were recruited.The families´ experiences were investigated using specifically created, structured interviews.

Results: Thirty-three interviews were carried out with the parents of children assisted by the VRPPCC. In 49% of respondents, the family cared for the child without any external help; only 9% of respondents had a dedicated caregiver that substituted the parents for some hours per day. In 73% only one parent worked. 73% of the children had feeding´s devices, 36% tracheostomy devices and about 50% of the children were supported by a ventilator.The time spent by parents caring for their child was about 8 hours/day (median 7,8: range 3-24 hours).

Discussion: The analysed data showed that the families of children with complex needs spend long periods of time managing their child's daily care needs (8h/day). In 73% of the families one parent doesn't work to take care of the child.This study looks specifically at the child's healthcare needs whilst other important aspects are not considered. In fact, psychological, social, emotional and educational issues are an additional source of concern for the family.Therefore, these families must be supported by dedicated healthcare teams provided as part of the national healthcare services.