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Talking to children about illness and end-of-life 

Children may find it difficult to comprehend the limitations of serious illness and its implications, and they experience grief differently to adults. Sally Cotterell is a counsellor on our patient and family support team. She looks at how families can support children during challenging times. 

Often our team will help a parent, and their partner or family, decide how best to explain their diagnosis to a child; the community social worker and community nurses will also offer support. As school is pivotal in a child’s life, we also encourage good dialogue between the parent, the child and the school. 

When talking about illness it’s about getting the pacing right, so with small children that means offering building blocks of information over time. It’s important to help children understand the changes in the health of their loved one that they may be witnessing. Don’t be scared of talking about these changes and acknowledge the sense of loss. The whole family will be adapting to doing things differently, when previously their loved one would have been more involved. This may happen without them really noticing they’re doing it, which can be encouraging for families as they are better able to cope if changes happen more gradually. 

As a support team, we may not need to do anything other than noticing and acknowledging what the family is already doing. Communities do so much to support families that are going through a challenging time, but we are here to offer help and advice if they’re struggling with the psychological and emotional aspects. 

Sharing the illness journey 

Everybody’s illness journey will be unique and as the speed at which things change and progress is different this will determine how these conversations go with children. It’s natural that parents want to protect their children, but really it’s about how best to support them. Taking time to come to terms with your diagnosis (or your partner’s) is important, before telling your children. When the time is right, we can help people find simple words and clear language. It helps children to understand, rather than it being a lengthy explanation. 

Children may have key questions: ‘what is cancer?’  for example, and ‘can I get it?’ They need reassurance that it’s not contagious and they need to know it’s not their fault. Sometimes the worries children are bearing can be responded to very simply with an honest answer. 

When it comes to telling children about illness and dying, families mustn’t put pressure on themselves to ‘get it right’ because it’s incredibly painful and personal. It may be almost unbearable to tell a child you’re dying and it needs to be done with support from family and loved ones. 

Grief and bereavement  

We want to reassure people that grief is a normal process that everyone will go through at some stage. About 10% of those in our care at Martlets will ask for counselling support. We do see children for counselling, but more often what we do is support the parents in supporting the children.  

Often people don’t need professional guidance as long as they get the information booklet we give out just after a loved one has died, to help them with the immediate practical things. We also send out another booklet after six weeks which gives a lot of guidance about the normal effects of grief; it normalises things like lack of concentration, being ok one minute then in pieces the next, and not quite knowing how to be. It is normal to feel quite lost because your whole framework for life has changed and the dynamics within the family may have completely changed. Re-organising as a family and to find a way through can take some time.  

There’s a section in the booklet about talking to your children. It’s important to look after yourself as a parent or carer and to think about what you feel comfortable sharing, but try and be honest as children take in a lot more than we might think they do. They’ll pick up on emotions and behaviour that isn’t verbal, so it’s important to be as honest as you can about what you’re feeling and how it’s affecting you rather than trying to push that down to protect them.  

It’s a normal feeling

It’s also crucial to ensure that children understand that what they (and you) are feeling is normal and that it’s ok to express it. Often parents need confirmation in understanding that children don’t grieve in the same way as adults. Children move in and out of their grief quickly. They may ask a profound question, get the answer to it, then be off and play a minute later. That is quite normal, whereas for adults we’re left in that painful state for much longer.  

 As they grow, children will have different understandings of death and dying. When they’re very young they won’t understand the permanence of death. So it will need to be re-explained as they develop. How they respond to the knowledge that they’ll never see that loved one again is something they’ll need to be guided through. Simple ways to help children through grief are to talk about a loved one regularly. You can also encourage them to play and to have fun, and ensure there’s some consistency in their life.  

All emotions need to be expressed constructively. With grief sometimes the depth and range of emotions are unknown. For adolescents, they’re going through such a massive developmental change. Having to cope with the death of a loved one on top of this can be overwhelming. They’re trying to work out their own identity, to come to terms with death being permanent, and trying to find their own direction in life.

It’s a confusing time and they may not know how to access and handle their emotions. They’re being hit by all the hormonal changes of adolescence. They’re naturally wanting more separation from parental figures and to spend more time with their peers. So, when they experience a loss at this stage in their development it can be very confusing for them. They need to know that showing vulnerability is ok and that it’s their decision as to who they want to share their feelings with. Sometimes supporting them in deciding what feels safe to share and with whom is important.  


Useful Services and information:

Cruse Bereavement Service

Cruse offer a bereavement helpline to give support as you need it. In addition you can also find resources on how to support your child on their website.

0808 808 1677

Winston’s Wish 

Winston’s Wish has a wealth of resources and advice on how to support your child through bereavement. This is whilst also dealing with your own grief. They also have a free phone helpline you can call.

08088 020 021

Childhood Bereavement UK

Child Bereavement UK supports families and educates professionals when a baby or child of any age dies or is dying. They also support when a child is facing bereavement.