The role of technology in children's palliative care

For most children, growing up is about going to school, riding a bike or playing with friends.  But we know that for children with life-limiting conditions and disabilities, all this is often out of their reach. They may be locked inside a body which means they are unable able to walk, talk or even move their arms and legs. At Lifelites, we work hard to give these children opportunities to join in with the world around them by donating and maintaining hundreds of thousands of pounds worth of specialist technology.

You may not realise it, but technology can play a vital role in the lives of children in hospices. It has the potential to remove the barriers put up by a child’s disability or condition and open up a world of fun, creativity, communication and control. Hospice staff even tell us that this equipment can be life-changing for the children they care for.

Most of our special technology is portable, so it can be taken anywhere the child is – to their wheelchair, or their bed or even into their homes. There is something for them all to use, irrespective of the impact of their illness on their abilities. It helps the children have fun, stay involved with their families or social groups, and distracts them from their illness.

At each hospice, we give the children touchscreen computers which they can use to keep in touch with their friends, play their favourite games with their brothers and sisters or even do their homework. If they have limited mobility and can’t operate the computer using the touchscreen, they can use the variety of specially adapted mice (switches) we provide, or they can use Eyegaze, a sensor which enables them to operate a computer using just with the movement of their eyes. Providing opportunities like this is crucial for these children.

A member of hospice staff told us: “We have a four year old child using our service who has Leukaemia. He came in for his first visit recently and was very unsettled for a while. A carer took him to the games room and loaded Choose and Tell [Nursery Rhymes]. The child sat on the carer’s knee and shrieked with delight when he realised he had control over the story. He loved the touch screen as he cannot use the mouse due to tremors. Thanks to Lifelites, the child started to relax here with us. The ice was broken.”

But assistive technology isn’t just used for play. It can give these children a gift they never thought possible – a voice. With the help of communication software, non-verbal children are given the ability to speak by using an iPad or the Eyegaze. They can tell their carers when they are in pain, what they’d like to eat or even tell their parents that they love them. Our equipment can also help develop a child’s cognitive skills. They can learn cause and effect, identify shapes and colours and create pieces of art and music. 

Certain pieces of technology can even encourage children with physical disabilities to be more active. Our Magic Carpet is a portable unit which projects pictures onto the floor, a wheelchair tray or bed that the children can actually play with. It’s perfect for children with limited mobility and the bright colours and sounds encourage them to move. In a life where everything is done for them - when they get up or go to bed, have meals or treatments – it gives these children a rare opportunity to control something for themselves.

For us, donating this equipment is also about the smiles it brings to the faces of the children and families who are focused on caring for their child’s complex needs. We know that for these families, nothing is more precious than the time they get to spend with their children. Our technology can give them the invaluable opportunity to relax and have fun together and create special memories for them all.

A nurse at a hospice told us: “A family whose child was dying of Leukaemia used iMovie on one of the Lifelites iPads to create a little movie of the things she enjoyed here at Little Bridge House during her last few days. Her sister then wrote a lovely song to go with it using one of the apps. I’m sure it will be treasured by the family forever.”

We donate and maintain this technology for the children every children’s hospice service across the British Isles, but we couldn’t do it without our supporters. It costs us over £1,000 a month to provide and maintain this equipment at each hospice. If you think you could support us, please visit our website or get in touch at info@lifelites.org or 0207 440 4200.

Simone Enefer-Doy is CEO of Lifelites

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