Reaching out/Reaching in: Exploring the impact of accessible video conferencing on the lives of those using a hospice for young adults
Research co-ordinator at Helen and Douglas House Hospices, Oxford , UK
Douglas House was set up in 2004 as the first hospice specifically for young adults (16-35) with life-limiting conditions. Young adults (who we refer to as “guests”) come to Douglas House for planned respite stays (to give them and their families/carers a break), to help manage pain or other symptoms, to facilitate hospital discharge, in a family crisis and for end of life care. As an organisation, we have become increasingly aware of gaps between visits and how we can offer better ongoing support. In contrast to in-house stays, communication between visits tends to be initiated by staff rather than by guests, and to take place with family members rather than directly with the person themselves. Our dilemma is how to replicate the face-to-face and personal communication so valued by guests when they are not with us. This project will explore the potential value of accessible video conferencing to enable young people with life-limiting conditions to more easily and positively be in touch with hospice staff at Douglas House. The aim is to develop guests’ capacity to take control over the time and nature of contacts between stays, and so improve their quality of care and quality of life.A survey and trial carried out with guests last year confirmed the challenges of other forms of communication, and revealed enthusiasm for but lack of experience in videoconferencing.
In exploring the possibilities for video-based communication, Douglas House came across ‘CanConnect’, a modified form of Skype developed by the CanAssist team. Essentially, CanConnect makes video conferencing simpler and physically easier to manipulate, and so potentially accessible to those with both physical and learning disabilities.
Douglas House hopes to recruit 30 participants for this project, asking each to trial CanConnect/Skype for a six-month period and will collate statistical and qualitative data on their experiences. The project aims to measure changes to the quantity of communications, and to the quality of interactions to explore the success or otherwise of the project. Alongside our own measures and priorities, Douglas House acknowledges that enabling the use of accessible technology is likely to open up new and unanticipated avenues of communication and wishes to support and record these.