13 May 2011
New research, commissioned by the national charity Children’s Hospices UK, shows that there is a lack of public awareness and understanding about the valuable support that children’s hospices provide for children and young people not expected to reach adulthood, and their families.
The research was conducted as part of this year’s Children’s Hospice Week (14-21 May) which aims to break down misconceptions about children’s hospices and raise awareness about the support they provide.
The research highlighted a number of important themes, including: Lack of awareness about children’s hospices
When asked to name an organisation that cares for children with life-limiting conditions, more than seven out of ten people (73%) did not cite children’s hospice.
Confusion about who children’s hospices support
The majority perception from the research (65%) is that children’s hospices support children with cancer. Although not incorrect, only a small number of children supported by a children’s hospice are affected by cancer with the majority having a wide range of complex neurological and metabolic conditions which deteriorate over a period of many years.
Beyond the hospice building
Just four in ten people (40%) are aware that children’s hospices provide care in people’s own homes. Whilst children’s hospices do support families in a building, the majority also provide support in people’s homes too.
Support for the whole family
Less than half of respondents (48%) are aware that children’s hospices offer the opportunity for healthy brothers and sisters to take part in activities. And only 45% of those surveyed are aware of the support that extended family, like grandparents receive from children’s hospices.
It’s not just end-of-life-care
Whilst 91% of respondents correctly identified end-of-life care as a service that children’s hospices provide for children and young people; many are unaware about the vast range of other support they provide. For example, far fewer people identified that they care for children in the home so parents can have a break (69%) or offer play and music therapies (68%).
Mike Keel, Chief Executive of Keech Hospice Care, said: 'Keech Hospice Care welcomes this research because it supports our anecdotal evidence that people often misunderstand what our Children’s Service is. It is true we support dying babies, children and young people, but most of these children will have had their condition for many years before their death. Much of our work is in supporting the child and family in these years to make the most of the time they have left.
It is sad to think that people’s misunderstandings about our service and what is available to them may be causing them to miss the help and support they need. Or because people don’t want to talk about death and dying, we are not giving the dying person (or their family) the opportunity to talk about what they want and prefer. We therefore support any initiative that gets people talking about and understanding hospice care.’
To find out more about how you can get involved in Children’s Hospice Week please visit www.keech.org.uk/chw. To find out more about what we offer at our children’s hospice please visit www.keech.org.uk/childrenshospice.
