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New survey: lack of understanding about children’s hospices & palliative care

May 24, 2017

A new survey commissioned for Children’s Hospice Week (22-28 May) gives fresh insight into people’s perceptions, feelings and experiences of children’s palliative care.

The survey, carried out by UK charity Together for Short Lives, uncovers what people know about children’s hospices and reveals people are uncomfortable talking about serious childhood illness and death.

Over a quarter (26%) said they didn’t know what children’s hospices and palliative care means, with many unhelpful myths still evident as people associated it with negative words like ‘pain’, ‘suffering’, ‘tragic’ and ‘distressing’.

This supports Julia’s House’s experiences of talking to parents caring for seriously ill children. When parents to three-year-old Leo and one-year-old Elliott - who both have an extremely rare metabolic condition - were told about Julia’s House, the Dorset and Wiltshire children’s hospice charity,  their reaction was typical. Ben and Kayleigh said:

 

“We thought oh no, we don’t need that – a hospice! But we decided to have a look around anyway and we absolutely loved it. It was literally a house full of toys and fun, just like a proper family home.”

Worryingly, the findings also reveal that over one in three people (38% [¹]) would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting or life-threatening condition.

Families caring for seriously ill children often say they feel lost and alone when coming to terms with the news that their child may not reach adulthood. This is on top of the stress and strain of providing 24/7 round the clock care, seven days a week.

Rachel, mum to twins Chloe and Eloise said:

I felt so isolated and lonely. For months my only social circle had been doctors and nurses. There were no toddler groups, no tea and cakes or the chance to meet other mums before Julia’s House stepped in. Knowing that once a week I have the chance to leave the house and have a break - have contact with the outside world – means everything to me. I get a lot of comfort from that.”

The taboos around serious childhood illness and death can leave families feeling isolated, abandoned and vulnerable without support. Having someone to talk to and a helping hand can make a massive difference.

Lydia, mum to three-year-old Darcie and one-year-old Hunter said:

“We were at a soft play centre and some parents pulled their children away and said:  ‘Don’t play with them’. I felt like shouting at them:  ‘you can’t catch a tracheotomy!’ That’s the best thing about Julia’s House - the people there are totally non-judgmental.  They are caring, reassuring and supportive. They make you feel great about yourself and proud of how you are coping. And that yes, actually, you’re good parents doing a really good job.”

Over a third (35% [²]) have had, or know someone who has had some experience of serious childhood illness or a child dying young. More than 1 in 10 (11%) said this has happened to them or a family member at some point in their life.

There are 49,000 children in the UK living with a life-limiting or life-threatening condition, which means they may not reach adulthood. Julia’s House is one of the UK’s lifeline children’s palliative care services providing vital support to families in Dorset and Wiltshire.

Children’s Hospice Week (22nd-28th May), organised by UK charity Together for Short Lives is turning up the volume on children’s palliative care, celebrating the work of hospices like Julia’s House and giving a voice to some of the families supported by these lifeline services. The week aims to improve the understanding of children’s hospices and children’s palliative care, so families know what help is available and has more confidence in seeking support.

About the survey: All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2,013 adults. Fieldwork was undertaken between 10th - 11th April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

[¹] From 1,573 adults who agreed to take part and expressed an opinion.
[²] From 1,566 adults who agreed to take part and expressed an opinion. 

Read and watch Chloe’s story here.

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