Lack of understanding of children's palliative care

Fri 26th May 2017

Image of Lack of understanding of children's palliative care

Taboos around childhood death could leave families at risk of isolation and of missing out on vital support

Public perceptions survey shows a worrying lack of awareness about children’s hospices and children’s palliative care – over a quarter (26%) said they don’t know what it is.

  • Over one in three people (38%) would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting or life-threatening condition.
  • Survey reveals almost 35% have had, or know someone who has had, some experience of serious childhood illness or a child dying young.
  • This Children’s Hospice Week, Together for Short Lives urges the public to reach out to families in their community and support services like Butterwick House Hospice.

A new survey, carried out by UK charity Together for Short Lives, gives fresh insight into people’s perceptions, feelings and experiences of children’s palliative care. The survey, commissioned for Children’s Hospice Week (22-28 May), uncovers what people know about children’s hospices and reveals how uncomfortable people are talking about serious childhood illness and death. It shows a worrying lack of public understanding about what children’s hospices and palliative care means. It shows people are uncomfortable talking about childhood death and seriously illness; these taboos could be leaving families feeling isolated and alone.

Butterwick House is one of the UK’s lifeline children’s palliative care services providing vital support to families. Butterwick House supports families in Teesside, County Durham, North Yorkshire and Wearside. The Hospice offers a very homely but purpose built environment and a warm welcome to life limited babies, children, young adults and their families.  The Hospice is staffed by a multidisciplinary team of experienced professionals and volunteers who are focused on enhancing young lives and supporting patients’ families through every challenge they encounter.

Lack of awareness and misconceptions

The charity asked people which words or phrases they associate with children’s hospices and children’s palliative care – over a quarter (26%) of people simply said they didn’t know how to answer the question. Those who did answer this 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; there is little consensus. The survey also shows there are still unhelpful myths about children’s hospice care with people associating it with negative words or phrases like: ‘pain’, ‘suffering’, ‘tragic’ and ‘distressing’.

The survey backs up Together for Short Lives’ experiences of talking to parents caring for seriously ill children: “I asked why a hospice? He’s not about to die! Or will our son die soon? At that point, I didn’t realise what a hospice could offer, and now I am so thankful that we were referred.” Mum, Andreia, supported by Richard House Children’s Hospice.

Taboos about childhood illness and death

Worryingly, the findings also reveal that over one in three people (38%) who answered would not feel comfortable talking to a friend about their child who had been diagnosed with a life-limiting or life-threatening illness, with women more likely than men to feel comfortable talking to a friend in this situation (60%1 versus 52%1).

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

Mum, Vicky Whyte said: “When someone didn’t find a way to show us that they cared, we assumed that they didn't… At times it felt like I was struggling to hold onto my sanity because of my distress over Leah’s illness… I appreciated it when people said things like ‘I've heard about Leah’s illness, I'm really sorry, this must be so difficult for all of you.’ …Leah and I spent months in isolation and messages of support from friends penetrated our sense of aloneness and helped us to face each day knowing that others cared and were praying for us or thinking about us.”

Barbara Gelb, CEO of Together for Short Lives, said: “It’s clear that there’s 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 don’t 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’s 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 a quality of life, however short, and this understanding means that the public is better able to support families in their local community.”

Huge number of people could be affected

Over a third (35%2) of those who answered had some experience, either personally or through someone they know, of a child who is living with a life-limiting or life-threatening condition, or that has died young due to a life-limiting/life-threating condition, with more than 1 in 10 (11%) saying this has happened to them or a family member at some point in their life.

There are at least 49,000 children and young people in the UK living with a condition which means they may not reach adulthood. The survey shows the ripple effect of a child with a life-limiting condition and the impact it can have on their family and wider community.

Together for Short Lives, through its Children’s Hospice Week campaign, want to improve understanding of children’s hospices and children’s palliative care so families know what help is available and have more confidence in seeking support. Equally, the charity wants to break down stigma and taboos about childhood illness and death so people are more able to reach out and support these children and families in their community. 

For more information about the services freely provided by Butterwick House Hospice for families across Teesside, County Durham and Wearside see our information pages here