If you're looking after a child with a life-limiting illness, or your child has a loved one who is dying, here are sources of support and issues that you might want to think about.
End of life care for children has a similar approach to end of life care for adults. It's concerned with the physical, emotional, spiritual and social needs of the child and their family. Healthcare professionals, friends and family can focus on making the child's life as fulfilled as possible, from relieving symptoms to playing games.
Seeing a child go through end of life care can be overwhelming and distressing. If you need help and support, you can contact the following:
- Your GP or palliative care team
They can talk to you and listen to what you're going through, and refer you or your child to the appropriate services, such as counselling or pre-bereavement care.
- ACT (The Association for Children's Palliative Care)
This is a charity that offers support to children and young people with a life-limiting or life-threatening illness, and their families. Helpline: 0845 108 2201.
- A hospice
There are special hospices for children that provide many services, including specialist respite care (when carers are given a break from caring), terminal and emergency care, telephone support, practical help, advice, information and bereavement support for all family members. They have a home-from-home environment. Find out more about hospice care on the Help the Hospices website.
If your child has a loved one who is dying
If a child has a loved one who is going to die, they can benefit from special support.
Sarah Smith, bereavement counsellor at London's Trinity Hospice, says, "Hospices offer pre-bereavement care to help patients and their family in the run-up to end of life. We especially encourage this for children because children's stress levels are at their highest before bereavement because of fear and the unknown."
Pre-bereavement care gives the child a chance to think and talk about their feelings, and share their worries.
If you're a parent and you know you're going to die, Sarah suggests thinking about making a memory box to give to your child, or making one together. This is a box containing things that remind you both of your time together. It can provide an important link between you and your child once you're gone.
If a child has lost a loved one
During bereavement, it can help a child to talk about the person who has died, whether it was a grandparent, parent, brother, sister or friend. "Sharing and talking about emotions and about the person is important, especially for children," says Sarah. "If they have lost a loved one, it's important to have someone with whom they can talk about that person. It could be through photos, games, memory boxes or stories."
If the person who has died didn't leave a memory box, Sarah suggests making one with your child. It can include gifts, shells collected on the beach, memories written on a card; anything that makes the child feel connected to that person.
You can find out more about children and bereavement at the Childhood Bereavement Network.