BACKGROUND and SUMMARY

About Lifelites

Lifelites empowers 9,000 children and young people in hospices with life-limiting, life-threatening illnesses and disabling conditions by providing them with opportunities to benefit from the power of assistive and inclusive technologies to learn, to be creative, to communicate and to take control. There is a Lifelites project in all 49 baby and children’s hospices in the UK and Ireland.

The hospices do not pay a penny towards their Lifelites project and all of Lifelites’ work is funded by donations: the equipment, ongoing technical support and training at each hospice costs around £50,000 over four years.

Introduction

The 2014 Lifelites Hospice Conference was held at the Acorns Children’s Hospice Trust head office just outside of Birmingham.

We wanted to bring together our colleagues from across the children’s hospice movement to provide them with an opportunity to discuss the impact Lifelites has and the difference technology can make to the children they work with. We were also keen to hear from them what we could do to develop the equipment and services we provide to better meet the requirements of their children.

We designed each session to encourage the delegates to think about the impact and role technology has now and could have in the future. It quickly became apparent that hospices are keener than ever about the potential technology has to improve the lives of the children they work with.

Who attended?

The conference delegates were from a cross section of children’s hospice services: everyone from IT and facilities managers, heads of care, therapists and play specialists were represented.

KEY DISCUSSION POINTS

Portability – It is important that the Lifelites equipment can be used around the hospice and, if possible, out in the gardens too. It also helps the children to feel ownership of the equipment when they can use it anywhere they want to.
Our response – Lifelites equipment has been removed from the confines of computer suites into the communal areas and the children’s room, etc. Wherever funds permit, we will provide desks with wheels so computers can be taken anywhere in the hospice. Wherever we provide Eyegaze it will be with its own stand to enable the widest possible use, even in the bedrooms. iPads will be provided with drop proof covers to enable use on the children’s laps.
Connectivity – This adds value on lots of levels because so much of what the young people and their families want to do with computers is online – play games, keep in contact with their families, friends, schools and workplaces. So it is good if they can access the internet wherever they are in the hospice.
Our response – From now on, all our computers and tablets will come with wifi capability. We will also be looking to provide wifi points to enable internet access in as wide an area as possible throughout the hospice.
Usability – In order for the staff and children to get the best out of the Lifelites equipment, it needs to be easy for the care staff to use and accessible by the children.
Our response – We are committed to ensuring that care staff are familiar with our equipment and know how to use it. Through the appointment of a professional training manager, our aim is to provide effective training to as many staff as possible as often as possible. The training manager will also recruit and train volunteers who can deliver care staff training on behalf of Lifelites. In this way, we will be able to provide training, not just at the time of installation, but in conjunction with CPD days, etc. As well as this, in addition to the items we already provide to ensure accessibility whatever a child’s ability e.g. special switches and software, we will continue to seek out the latest developments in inclusive technologies such as: Eyegaze adjustable stands so they can be used lying in bed; adjustable desks helping young people in wheelchairs to get up close and personal to a desk top computer; iPads with drop proof covers; and touch screens on every computer.
Socialisation – The opportunities for activities the Lifelites equipment provides helps to break down barriers in unfamiliar surroundings, so families visiting the hospices can relax and have fun together. The cameras and camcorders give them facilities for group activities so the children can have a social life.
Our response – By sharing real life stories, we will ensure that hospice care staff are aware of the part Lifelites technologies can play in the social life of the hospices and encourage them to use the equipment to enhance a wide variety of activities which can make a big contribution to the time the children and their families spend at the hospices.
Educational links – The children who go to school often use special equipment and software so it would be useful if they could have access to the same when they go into the hospices.
Our response – Now we have a section on our application forms asking for details of items used by the children at school which we may be able to incorporate into a new package, which will give the children something familiar to use when they are at the hospice.
It’s good to talk – There was a strong sense that if there were more opportunity to share information, care staff could make the most effective use of the Lifelites technologies. They want more opportunities to get together to share ideas and experiences.
Our response – On our new website, we have made provision for an information exchange for hospice staff. Here we will develop a resource library with links detailing the latest reports on the use of our technologies, signposting to other online facilities, video and written training guides and forum facilities to help them exchange best practice with the Lifelites technologies. We will publish bi-monthly e-letters for hospice reporting on all the latest developments and case studies from Lifelites. We will also, endeavour to organise Lifelites conferences on an annual basis in different parts of the country to give more hospice staff as possible the chance to be involved.

WHAT THE DELEGATES SAID ABOUT THE DAY

Excellent day well planned and presented. Pleasant venue and nice group of people.
I have had a tremendous day. Not only having a developmental experience but met lots of new people and shared stories. I can't wait for our new Lifelites package and will welcome it with enthusiasm and excitement. Would like more events like this.
It would better if there could be more regional events.
Great day. Good to talk to colleagues from other hospices about their equipment. Thanks for your amazing hard work.
Absolutely amazing conference. You are invaluable to each and every hospice. Our children and families are grateful. Thank you.
Really enjoyed the day. Enthused to move forward on using Lifelites equipment more effectively.
Thank you for a wonderful provision.
Great conference. I will be leaving with lots of information for my colleagues. Thank you!
Sharing ideas was particularly useful.
All sessions were very successful and very good. It was good to share experiences with other people and now I have lots of new ideas. More please!
Great to meet other people from hospices and share ideas, knowledge and experience.
It was nice to meet other hospices to see how they use the technology.
Very informative and looking forward to the new package. Looking forward also to your [technical] support [which is] much needed to ensure the equipment is used to its full potential.

1