Background Research shows that palliative care for children requires special attention and a coordinated approach to support the child and its entire family. In June 2012 a project was started in the Women’s and Children’s Clinic, Academic Medical Centre, Amsterdam, the Netherlands.
The aim of this project is to give a child with a life threatening or life limiting illness the highest possible quality of life and to relieve parents from all coordination tasks.
Methods We developed a multi-disciplinary team of professionals, called the Emma Home Team (EHT), to support families with a child in the palliative phase. A case manager (a paediatric nurse) visits the family at home and coordinates the care in collaboration with parents and professionals to provide a unique situation for each family.
When the treatment period has finished the case manager evaluates the care with the parents and professionals involved.
Results In the last 18 months over 90 families were supported by the EHT. In 32 cases the care is finished and evaluated. These evaluations all show the importance of the coordinating function of the case manager. Parents who were supported by the EHT indicated that the commitment, expertise and accessibility of the team were a great support for them.
Conclusion The interventions by the EHT seem to have an important added value for children and families in the palliative phase. A next step is to see if this way of caregiving can be used in other hospitals.