First regional network to improve children’s palliative care in The Netherlands

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The PAL Foundation is committed to increase and spread children’s palliative care expertise. An initiative has been started to build a children’s palliative care network in the region with the aim to strengthen the collaboration and coordination for families with a child with a  life-threatening or life-limiting illness.

The challenge
There are usually many caregivers involved with a family with a seriously ill child. All these caregivers are focused on a specific aspect of the care and work from their own perspective and methods. While each work with a great deal of compassion, for an approach to be effective it is important that all the people involved in this care know each other and make a comprehensive plan for transfer from one service to another, coordination and the setting of goals tailored to the family. A regional network of all the involved organisations is the best way to regulate this. 

The inspiration
The plan was co-inspired by the project Emma Home team, an initiative from the PAL Foundation with Emma Children’s Hospital AMC. The Emma Home team plays an important bridging function in transferring care of a child from hospital to home. The connection between the Emma Home team and the children’s palliative care networks in the region make for a comprehensive approach towards the care of the child and their families.

Non-medical care
The network consists not only of care organisations but the organisation promoting youth health is also involved. This forms an extremely important bridge between medical and non-medical care. Within our regular care infrastructure in the Netherlands, these are still two different worlds. But not for the families: both worlds affect their sick child. The goal of the network is to stimulate comprehensive support not only for seriously ill children but also for their parents/guardians and siblings. It is comprehensive in the sense that they are aware of the physical, psychosocial and spiritual aspects of care, plus the important dimension for children: development. 

Evaluation
The initiative will examine whether the approach is effective and easily transferable to other regions. Parents who are supported by the network will be interviewed about the consistency in the care and the effects this had on their child’s quality of life. 

Stephanie Vallianatos is the project leader of the children’s palliative care network, Holland Rijnland (Leiden and surroundings), at the PAL Foundation. You can find out more at www.kinderpalliatief.nl

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