%0 Journal Article
%T The use of digital legacies with people affected by motor neurone disease for continuing bonds: An interpretative phenomenological analysis study
%A Barbara A Jack
%A Katherine Knighting
%A Mary R O¡¯Brien
%A Oliver Clabburn
%J Palliative Medicine
%@ 1477-030X
%D 2019
%R 10.1177/0269216319845805
%X 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. To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. A qualitative study underpinned by interpretative phenomenological analysis. 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. Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos. This study expands the existing continuing bonds model of grief to include an ¡®autobiographical chapter¡¯, creating ¡®The Model of Reciprocal Bonds Formation¡¯
%K Motor neurone disease
%K MND
%K amyotrophic lateral sclerosis
%K ALS
%K digital legacy
%K bereavement
%K continuing bonds
%K interpretative phenomenological analysis
%U https://journals.sagepub.com/doi/full/10.1177/0269216319845805