Investigating the use of digital legacies with people affected by Motor Neurone Disease (Poster Presentation- Second Place Prize)

Motor Neurone Disease (MND) is a progressive, terminal, neurological disease meaning palliative care is crucial. To date, little research has investigated how children/young people are affected when a family member has the disease and subsequently dies. As such, there is a dearth of literature on how to best support these young people. This study, using Interpretative Phenomenological Analysis (IPA), will investigate the use of digital legacies. People diagnosed with MND will record a series of video-messages about their life, accomplishments and memories specifically for a child/young person in their family. Access to the digital legacy will be given to the child/young person to use as a means of reconnecting/providing emotional support. Multiple methods have been adopted to raise awareness of the study and aid recruitment. Social media, blogs, forums, traditional newsletters and a viral campaign have been utilised to raise awareness of the study, yet, the recruitment process has still proven to be challenging. Firstly, people living with MND will be informed about the possibility of creating a digital legacy for a child/young person in their family. Once a digital legacy is recorded, or used, the person can be interviewed for the study about their experience of creating, or using, a digital legacy. Identifying and recruiting eligible participants is proving to be a significant practical issue and any suggestions or guidance are welcomed.