This year Children’s Hospice Week (from today, 26 April to 3 May) is shining the spotlight on the brave children who know that their brother or sister will probably die before them, the issues affecting those siblings and the range of free help and support available from children’s hospices and other charities around the UK.
When a child is diagnosed with a life-threatening or life-limiting illness, it is the beginning of an unimaginably difficult and sad time for the whole family. For the ‘well’ brother or sister, it can have a significant emotional toll.
Andrew Fletcher, director of external affairs at Together for Short Lives, the UK’s voice for children’s palliative care and the charity behind Children’s Hospice Week, said: “Growing up knowing that your brother or sister may not reach adulthood is unimaginable. Yet thousands of children face this reality.
“Thanks to the fantastic support provided by children’s hospices to the whole family, many of these ‘well’ children are now better able to cope with the illness of death of a brother or sister. They are given the time and space they need to be themselves and to come to terms with the difficulties they face.”
A different childhood
The sibling of a child with a life-limiting or life-threatening condition can grow up in an environment often dominated by hospitals, tests, medicine and 24-hour care.
Recent research ‘Paediatric life-limiting conditions: coping and adjustment in siblings’ and a Together for Short Lives survey of frontline hospice care workers, shows that siblings of children with life-limited conditions often feel that they are different to other children, that family life isn’t the same as their friends and that being a carer is part of their responsibility.
Dr Jan Aldridge, researcher and clinical psychologist at Martin House, said: “Brothers and sisters often compartmentalise life, not wanting to mix school and home and behave differently at school where they can be more carefree and forget their worries. Many siblings also see themselves as the ‘glue’ in family relationships, feeling responsible for people around them, taking on the role of peacemaker and helping to avert arguments.”
Support available for siblings
Children’s hospice services offer a huge range of bespoke support for siblings to stop them feeling isolated, to help them express their feelings and, importantly, to allow them to have ‘me’ time and fun, just like their friends. Counselling, activity days and helping to improve communication between parents and well children are some of the key ways that children’s hospice services offer support to the whole family.
George has been going to Krafty Kids at Little Havens for two years. Krafty Kids is a group for the brothers and sisters of children with life-limiting conditions and George and Ava’s mum Liz spoke about the amazing difference it has made:
“It’s been a really tough year for us all and unfortunately the effect that it has had on George is so often overlooked by people.
“Going to the Krafty Kids group has been such a huge step for George as his anxieties about doing things without us have not allowed him to take part in activities for himself. He doesn’t have the confidence to attend after school clubs or to go to parties without us as he is consumed with the fear that something will happen to Ava when he is gone,” Liz said.
“At Little Havens children’s hospice, the staff fully understand the pressures that George faces and the fears and anxieties he has. They have a magical way of working with siblings to ensure they are able to have some special time, that’s all about them, not their poorly sibling. It’s about having fun, doing crazy things, with people who totally understand his individual needs.
“George has now decided that he might like to start a dance class after school. His time away from us, with the team, has given him the confidence to try new things. We are thrilled! We want George to be doing all the things his friends do but until now he just hadn’t felt able to.
“For us it’s been such a gift to see George happy and smiling after his days, full of excitement about what he’s been doing. Watching a more confident George emerging has been priceless. There is no greater sound than the sound of a child laughing and that’s what Krafty Kidz has been about.”
Children’s Hospice Week
Children’s hospices rely on public support to keep them running and providing care and support to life-limited children and the siblings and parents of those children. Children’s Hospice Week aims to raise awareness of what children’s hospices do, as well as promote fundraising activities by local children’s hospices.
“As charities, children’s hospice services rely on the generosity of the public to continue. Please show your support for these vital services during Children’s Hospice Week,” Andrew Fletcher said.
Today is Superhero Friday, in recognition of the hospices which, like heroes, are there for people when they need them most. But there are activities and ideas throughout the week that you can get involved with to show your support for children’s hospice services. Visit www.childrenshospiceweek.org.uk for ideas and inspiration.
And keep checking the UK edition of ehospice all next week for more stories from Children’s Hospice Week
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