Author: Annie Brylewska-Cooper

‘I wish I had a magic wand’.

 

How many times have we wished to erase the sad, the painful, and the uncomfortable experiences our children face? We are genetically programmed to be their protectors – to ensure their safety and survival, which includes their emotional as well as physical wellbeing.

But how to we define emotional wellbeing? Is it the absence of challenge? Of change? Of discomfort? And is that realistic? Can we – and should we – protect our children from difficult moments forever? Bereavement shows us sadly that we can’t: there is no magic wand.

Research shows that a degree of challenge to our bodies and brains builds essential survival skills and – current buzzword in mental health – resilience. Our immune systems are stimulated by the challenge of vaccines, our muscles build through stress, and our ability to cope under pressure is directly related to the way we are exposed to, and supported through, challenge and change.

People cope better with the challenges life brings if they are able to talk openly about their concerns and feelings, and are supported through active listening and, when they are ready, in planning actions that will help them navigate difficult times. We all require support when we are having a tough time – and that requires openness and honesty about what’s happening in our world. Just as we’d ask for lift if we can’t drive, we can ask for – and offer others – an emotional ‘lift’ when we/they are struggling to find a way forward.

Our families tell us that starting difficult conversations around serious illness, death and dying are some of the hardest moments they face; they are also some of the most cathartic ones – the ones that unlock a door on their path. Many families want to talk through the information they are afraid of sharing with their children (which might be about diagnosis, prognosis, or death itself) before they feel ready to tackle those conversations; almost all families tell us afterwards that they experience an overwhelming sense of relief, honesty and openness in their communication that allows them to better plan for and approach bereavement with greater understanding of one another and a sense of togetherness.

Why is it important to talk to children about death and dying?

But isn’t death and dying too much for children to understand or cope with? The simple answer to this is no: not if that information sharing is pitched and paced at an appropriate level for their age and understanding, bearing in mind additional needs and communication styles. We know each family is unique and multiple layers of loss or trauma can impact children’s ability to cope, but most children develop an evolving understanding of what death and dying means as part of their life learning. See our website here for more information on what children of different ages and stages can broadly understand about death and dying and how they may react to serious illness and bereavement.

Children are learning about their world not just from what we choose to tell them, but how they observe their key people behaving and communicating, what they overhear, what they read, what they look at online, and what they hear from friends or teachers at school. When it comes to serious illness or bereavement in the family, we know it helps children to be included in updates about what is changing/has happened. They will already have an idea that something is wrong; and if they don’t have the opportunity to be made aware of key facts, shared in language that they can understand, with the opportunity to ask questions and check understanding, then hearsay, and what they may fill in the gaps with using their imagination, can be far more frightening, uncertain, and more anxiety-provoking.

What can I do to make these conversations as manageable as possible?

For more information on how to share difficult news with children, you can look at the relevant sections of our website here for serious illness and here for sudden death.

In addition, it’s helpful to consider the following ‘S.P.I.K.E.S.’ mnemonic, as described by Gaby Eirew in her book on terminal illness, co-authored with Dr Pippa Hawley (both experts in palliative care) Lap of Honour: a no fear guide to living well with dying – pp 56-7; ISBN: 978-1-7751811-0-1

It’s important to remember that this advice is written for people dealing with information sharing around serious illness, and is not specifically written for children, but the principles still apply broadly to the approach we would recommend when sharing difficult news around death and dying.

Setting – Arrange for somewhere private with the right people present. Try to have everyone sitting down, in good eye contact with each other and with enough time for each other.

Perception – Ask some open-ended questions to get a sense of how accurately the person [child] understands the condition [situation] and what they think is happening [has happened].

Invitation – See if the person wants to know more information. It is thought that if they ask for it, it may lessen the anxiety of you giving the bad news. They may shun the idea of being given bad news as a coping mechanism.

Give Knowledge – Warning that you have bad news for them can lessen the surprise and help their processing of the information. You could begin, ‘I am sorry that I have [more] bad news.’ It’s important to keep your language here factual and age-appropriate.

Respond with Empathy – They may react with sadness, shock, grief, rejection or silence and this is all normal and understandable. They may initially want to hide their reaction from you. Just because they behave as though it is all fine, does not mean they genuinely believe or feel that.

Strategize and Summarize what you and they need – this may happen later. It can be anything from a cup of tea for you both now to planning together in the future. We also recommend checking back with children and young people what they have understood, and putting right any misconceptions. This is a good time to see if they have any further questions or worries they want to share.

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