An innovative, technology driven project at Alder Hey Children’s Foundation Trust is exploring the potential of computer games technology as a communication tool for children with palliative care needs. 

Children receiving palliative care often have a higher level of awareness about what is happening to them than they can openly communicate. Facilitating communication in order to understand the impact of the condition on the child’s quality of life and the child’s feelings about what may happen in the future, without imparting unwanted distressing information is challenging.

Pretend play is well established as a therapeutic tool for communication with children.  Computer games technology has well developed and well understood mechanisms for realising imaginary worlds that allow structured but wide ranging social interactions.

Bringing these two approaches together, it is clear that computer games technology has the potential to develop new approaches to play based communication that will allow significant enhancements in the structure, range, dynamics and complexity of the scenarios that can be explored.

As a consequence it will be possible to enable, for a wide age-range of children, much improved communication about their condition.  This approach is much more likely to be acceptable and non threatening for older children for whom pretend play is no longer appropriate.

Multidisciplinary and child centred

The project brings together multidisciplinary skills in a collaboration which places the child at the heart of the project. It will involve children with life threatening illness in developing a virtual computer games world that can be tested and shared with others in similar situations.  

The virtual world will enable the child to explore their understanding of their condition and its impact on their quality of life and maybe used by the therapist to facilitate dialogue in order to articulate their understanding of their illness, the impact of the condition on their quality of life, feelings about what is happening to them and their wishes for future care. The project thus aims to develop and support communication protocols for use with children, young people and families.  

The project is a collaboration between the Specialist Palliative Care team and the Academic Department of Clinical Psychology at Alder Hey Children’s Hospital and the Centre for Health and Social Care Informatics (CHaSCI) at Liverpool John Moores University. 

In terms of funding this level of innovation, which will ultimately contribute towards the trust’s drive on the QIPP agenda, it has been a difficult journey. Partly because the multidisciplinary nature of the work where few examples exist or indeed involve the vulnerable groups within paediatric palliative care, but perhaps also, the NHS is not ready to fund bespoke applications involving such a level of innovation which is truly ‘blue skies’!  As such, the project is partly supported by the trust and ‘in-kind’ by LJMU.

Background and Motivation

A life threatening illness causes significant disruption to daily routine and to channels of communication with friends and family.  Furthermore, the life threatening condition itself undoubtedly causes psychological distress anxiety and uncertainty. 

It is a common observation that we live in a technological world and children in the west are growing up in an environment where computer technologies have become part of everyday activity. 

Given experience with non-technological play based approaches to supporting children in palliative care, we believe using the interaction devices of a technological age to communicate with a technological generation will enrich the lives of children and young people in helping them communicate at a very difficult time in their lives. 

In addition to supporting communication with children, we would expect further benefits in using games platform - not least a degree of ‘escapism’ from the sometimes grim realities such children face and lessons for  hospices and trusts about managing children and young peoples expectations through the use of technology. 

Although, as has been said, play based approaches are used to support children in palliative care situations, currently no application of computing or games technology has addressed how these emerging technological tools can help facilitate children’s understanding and acceptance of their diagnosis and its implications.  Nor, indeed, has the potential of such computer based tools to support children in helping family and professionals around them to communicate and deliver care in a way they want and understand.

Conclusion

This project will develop three main outcomes;

  1. An understanding of the role and potential for computer gaming technology to enhance care for children with life threatening conditions and palliative care needs 
  2. The development of a computer gaming platform, the design and functionality driven by the users of the game, to facilitate exploration of the child’s understanding of their condition and its impact on their quality of life, and
  3. Initial assessment of the computer gaming platform in the therapeutic environment.

Ultimately, the intention is to develop a tool which can sit along traditional ‘doll play’ so that we are able to support children covering a wide age range and needs, whilst at the same time maximising opportunity for parents and family to better understand how to help the child.