CP1- Investigating the use of digital legacies with people affected by MND (Poster Presentation)

Oliver Clabburn, Mary O'Brien, Barbara Jack, Katherine Knighting

Research output: Contribution to conferencePoster


Background: Dignity therapy is a proven palliative care intervention which encourages people, at the end of their life, to reflect and record their past experiences and memories by creating a legacy document. An alternative format, the ‘digital legacy', is a purposefully recorded selection of video messages regarding a person's life, memories and achievements using a webcam or iPad/iPhone. The topic of creating a digital legacy, specifically for a child, using ‘RecordMeNow' was presented at the APF (Allied Professionals Forum) meeting in 2014. To date, there is little published research about 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. Objective: This research is investigating the use of a ‘digital legacy' with people who are affected by MND. This means people living with MND (plwMND) create a series of video messages of their memories and accomplishments, specifically for a child in their family, which are later copied to a DVD or digital source. The process allows a period of reflection for the person with MND to document their life, whilst also creating a tangible resource for a young carer and/or bereaved young person. Methods: The study is underpinned by Interpretative Phenomenological Analysis (IPA) meaning a small homogeneous sample is required. Recruitment is currently underway and being achieved through MND care centres, traditional newsletter publications and utilisation of numerous online social media platforms (blogs, forums, Twitter and Facebook). Individuals who are interested in participating then establish contact with the research team. Data collection involves a single, unstructured interview with each participant. This offers a time for participants to discuss their experiences of creating/using a digital legacy. Written transcripts are then analysed in accordance with the IPA methodology. Discussion: Although recruitment is a challenge, the initial findings suggest that a digital legacy creates benefits for the plwMND. The process of creating a digital legacy requires little input from health care professionals. It is paramount for plwMND to be made aware of creating a digital legacy at the appropriate point in their disease trajectory. Acceptance of the disease, vocal ability and physical dexterity are crucial factors to consider when discussing the intervention with plwMND.
Original languageEnglish
Publication statusPublished - 8 Dec 2016
Event27th International Symposium on ALS/MND - Dublin, Ireland
Duration: 6 Dec 20169 Dec 2016


Conference27th International Symposium on ALS/MND


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