Investigating the use of digital legacies with people affected by Motor Neurone Disease (MND) : an Interpretative Phenomenological Analysis

• Main Author: Clabburn, Oliver
• Published: Edge Hill University 2018
• Subjects: 610; R Medicine (General)
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.743383

Background: A video-based 'digital legacy' is a selection of videos which document a person's life, memories, achievements, or special family events. The videos are copied to a digital source to be specifically given to a child or young person to use in the future. A video-based digital legacy may either be purposefully recorded by the person living with MND (plwMND), or, compiled later by bereaved family members. To date, there is little published research about how children and young people are affected when a family member has MND and subsequently dies. As such, there is a dearth of literature on how to best support these young people. Objective: This research is investigating the views, perceptions and experiences of digital legacies with people affected by MND. Methods: The study is underpinned by Interpretative Phenomenological Analysis (IPA) meaning a small homogeneous sample was required using purposive methods of recruitment. Interviews were conducted and audio recorded with four plwMND regarding their experiences of creating a purposeful digital legacy for a child or young person in their family. Interviews were also conducted with three bereaved young people regarding their experiences of using a video legacy of a parent who had died from MND. Also, a sample of twenty healthcare professionals, specialists and experts were interviewed from across the United Kingdom regarding their perceptions on the use of digital legacies with plwMND, and, young people who are bereaved. Ethics: Ethical approvals were obtained from a Faculty of Research Ethics Committee at Edge Hill University (FREC), the Health Research Authority (HRA), and the National Research Service for Scotland. Discussion: 'The Model of Reciprocal Bonds Formation' and coining of the term 'autobiographical chapter' has been developed from this study. Creating a digital legacy provides a number of mutual challenges and benefits for both plwMND, and bereaved young people. Recommendations are provided regarding i) optimal 'windows of opportunity' in which the digital legacy is recorded/used; ii) actionable solutions for current policy/practice; iii) future directions for research.