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Together for Short Lives survey finds large percentage of public do not know what children’s palliative care is

Author: Leila
24 May 2017

A new survey by UK charity Together for Short Lives (TfSL) has found that a large number of people do not know what palliative care for children is.

The study has shown that 26 per cent of people have a lack of awareness about children’s hospices and do not know what children’s palliative care is.

More than one in three people said they would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting condition. Women were more likely to feel comfortable than men, with 60 per cent versus 52 per cent.

Nearly 35 per cent have either had or know someone who has had experience of serious childhood conditions or a child dying young. More than one in ten people said this has happened to them or a family member at some point in their life.

Families caring for seriously ill children said they felt lost and alone when coming to terms with the news that their child may not reach adulthood, along with the stress of providing round the clock care for their children.

The survey was commissioned for Children’s Hospice Week, which runs from 22 to 28 May, and concludes that there is huge lack of understanding about what children’s hospices and palliative care means. 

(TfSL) asked respondents what words they typically associate with children’s hospices and children’s palliative care, and more than a quarter said they did not know the answer. Those who did answer responded with negative words like “pain” and “suffering.”

Andreia, the mother of a boy who was supported by Richard House Children’s Hospice, said:

 “I asked why a hospice? He is not about to die! Or will our son die soon? At that point, I did not realise what a hospice could offer, and now I am so thankful that we were referred.” 

 Commenting on the findings, Barbara Gelb, the CEO of Together for Short Lives, said:

“It is clear that there is still a great deal of fear and uncertainty across society in talking to families who are coming to terms with the heart-breaking news that their child will die young. People do not know what to say. This is compounded by misunderstandings about children’s hospice services – with many feeling that they are dark places and just about end of life care.”

“That is why we are shining a light on these lifeline services and giving families a voice in Children’s Hospice Week – so families know help is at hand, people understand that the work of hospices and palliative care charities is about quality of life, however short, and this understanding means that the public is better able to support families in their local community.”

For more information visit Together for Short Lives

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