A recent online survey of 2013 adults, 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), uncovered what people know about children’s hospices and reveals how uncomfortable people are talking about serious childhood illness and death.
It showed a worrying lack of public understanding about what children’s hospices and palliative care means and that people are uncomfortable talking about childhood death and seriously illness; these taboos could be leaving families feeling isolated and alone.
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,” said 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% versus 52%).
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.
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.”
Click here to read the full report on the Together for Short Lives website.