The use of digital legacies with people affected by motor neurone disease for continuing bonds: An interpretative phenomenological analysis study:

Background:Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person’s life, memories and achievements.Aim:To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease.Design:A qualitative study underpinned by interpretative phenomenological analysis.Setting/participants:People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee.Results:Five key themes emerged exemplifying mutual challenges and be...