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Digital Legacies

By Olly Clabburn

My name is Olly Clabburn and I am a PhD Researcher at Edge Hill University in Lancashire. I have a specific research interest in young people who help care for family members who have MND, and also those young people who are bereaved due to the disease.

My research is investigating the use of a ‘digital legacy’ with people who are affected by MND *. This means people with MND creating video messages and recordings of their memories and accomplishments specifically to be given to their children in their family to watch and use.
I seeking participants and will be interviewing people from the following three groups until April 2017:
People who have been diagnosed and are recording/have recorded a digital legacy for a child or young person in their family (e.g. son/daughter/grandchild/niece/nephew)

Young people (aged 11-24) who currently care for a family member with MND and use a pre-recorded digital legacy as a means of support.
Young people (aged 11-24) who are bereaved due to losing a family member from MND who are using a pre-recorded digital legacy to support them whilst they grieve.
I will interview between 5-10 people from each group to investigate their thoughts, views and experiences of being affected by MND and creating or using a digital legacy.

Interviews will last about 30 minutes and can be carried out face-to-face or via Skype depending on your location or preference. They will be informal, making it feel more like a conversation.

If you, or a young person in your family, would like more information or are interested in participating in the research, please contact Olly via email clabburo@edgehill.ac.uk or telephone (+44) 01695 654316.

* There are many digital legacy apps and programs available for download and use. RecordMeNow is an independent and not-for-profit organisation that assists the user in creating a digital legacy specifically to be given to a child or young person in their family. The RecordMeNow app is free to download and use from www.recordmenow.org or the Apple App store and provides prompting questions which can be modified, added to, deleted or re-recorded before exporting to a DVD or digital source.

The researcher and study are independent from RecordMeNow so any concerns you may have regarding the app can be sent directly to director@RecordMeNow.org

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