Raising children’s spirits

Stephen and Paul both provide spiritual care for dying children and their families. For many people the word ‘spiritual’ is read with religious connotations. They tell us why they are pleased the new NICE ‘End of life care for children’ guidance broadens this definition…

Stephen Harrison and Paul Nash

Stephen: It is often at times of crisis that the ‘big questions’ of life are asked – is there an afterlife? What happens when I die? However, I have found that children, particularly the youngest, do not ask these questions.

Children, even those with life-limiting and life-shortening conditions, want to enjoy life and do fun things. Showing the child that they are special and that their life has purpose can give a great deal of comfort, strength and even hope to the entire family.

For some children having their family and friends with them is all they desire. For others it can be having an opportunity to go out, perhaps to do some shopping or visit a museum. In the past we’ve been able to arrange for animals to visit the hospice – the penguins caused a lot of excitement!

Parents often need a very different form of spiritual care from me. That is not to say that they do not want to find enjoyment in life like their child does, but they do ask the ‘big questions’ and they will be searching for answers.

Having a sick child can often means putting your life on hold. Parents can feel like they’ve lost themselves in the stress of monitoring symptoms or being the ‘strong one’ in the family.

This is why I encourage parents to find time for themselves and recognise their own needs.

For many it can simply be taking the time to talk to someone who will listen without judgment. For others it may be going for a meal in a nearby restaurant whilst their child is in the hospice receiving respite care.

Paul: Caring for the spirit can be of vital importance, no matter what faith someone has or does not have.

I supported a family recently who had been told that their child was dying.

Their cultural and religious beliefs meant that, for them, it was important their baby be baptized. This may sound like a fairly straightforward event, but it soon became clear that there were several unfamiliar aspects to their request…

Their translator was clearly struggling to make sense of a word the family had said instead of water, and when we did an internet search, it came up as basil!

In orthodox Romanian Christianity, basil is important. The tradition is that basil grew at the foot of the cross on which Christians' believe Jesus died. The parents went on to explain that they did very little during the baptism ritual and that in their culture the Godparents did it all. With no other family present they asked a support nurse to fulfil this role, which she did willingly. 

The support, assurance, hope and comfort the family expressed was tangible and significant. This is what spiritual care can provide when we work with the family and child to fulfil their last wishes together.

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