Said they have, or know someone who has had, experience of caring for a child with a life-limiting/threatening condition.
Said they would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting or life-threatening condition.
Said they do not know what children's hospices do.
A new YouGov survey, on behalf of Together for Short Lives, has revealed a concern that families caring for a child with a life-threatening condition continue to face feelings of loneliness and isolation, with results showing that less than half of us (40%) would feel comfortable talking to a friend caring for a terminally-ill child.
To add to this, 37% of all those surveyed would not feel comfortable talking to a friend caring for a child with a life-limiting health condition.
Sadly, this reluctance to reach out to friends with a child with a life-limiting condition is despite many people having experience of friends or family members having children who have terminal conditions. The survey found that 9% of people say that they (2%) or a member of their family (7%) has had a child with a life-limiting condition, and altogether 30% of people have had or know someone who has had experience of caring for a child with a life-limiting or life-threatening condition.
Alongside a discomfort in talking about these issues, the survey also found that there is a widespread lack of understanding of what children’s hospices do, with a fifth of people (20%) saying they do not know what children’s hospices or children’s palliative care are.
Those who did answer the question offered a wide range of views which suggests that people have very different ideas about what children’s hospices and palliative care for children mean:
- 13% used words like sad, depressing, heart-breaking, unhappy, emotional and tragic to describe children’s hospices and children’s palliative care.
- A fifth (20%) described children’s hospices and children’s palliative care as being about dying, death, bereavement or end of life care.
- Only a small percentage (7%) used positive words like hope, love, friendly, fun, peaceful, incredible, and comforting to describe children’s hospices.
For families caring for a seriously ill child, children’s hospices offer a lifeline of care for the whole family throughout the child’s life, as well as at the end of life.
Kate Tuckwell, Mum to William added:
“As a nation we’re not particularly good at talking about the realities of dying, but even more so when it comes to children. As a mum to a child with a life-threatening condition I find it can take a lot of emotional energy to just keep going. Feeling lonely, ignored or having to put on a smile to make other people feel comfortable talking about my child and his Syndrome can be exhausting.
“For me, just showing an interest in a kind way means a lot. Just don’t expect much in return! Saying hello, asking how you’re doing that day is enough. If you don’t know what to say, then say that! There is no ‘right’ conversation starter with a parent in this position. It’s tough and there’s no point denying that. But shying away from it can compound a parent’s grief and sadness. So please, if you know someone in this position, reach out to them to say hello and let them know they and their child are being thought about. It really helps.”
The survey carried out by Together for Short Lives shows that perceptions about children’s hospices and levels of comfort in talking about seriously ill children haven’t changed significantly since the charity ran the same survey in 2017. In 2017 38% of the public said they would not feel comfortable talking to a friend who had been diagnosed with a life-limiting condition, compared to 37% in 2019.
Together for Short Lives’ Family Support Hub offers a range of services to try and ease the loneliness and isolation felt by families caring for a child with a life-limiting/threatening condition. The Hub offers emotional as well as practical support connecting families to other families and services when they need a helping hand.
“Caring for your child when you know they are likely to die in childhood is one of the most physically and emotionally challenging experiences anyone will ever face,” says Andy Fletcher, CEO of Together for Short Lives. “We know that these children and their families need all of our support. But in practice many people struggle to understand how they can find the right words to help and say nothing for fear of getting the words wrong.”
“As a charity, we want to raise awareness of children’s hospices and palliative care and tell people that it’s alright to talk about childhood illness and death – however difficult it is to find the right words. It is so much worse for families if they feel that they can’t talk about their beautiful children and the care that they need.Andy Fletcher, CEO, Together for Short Lives