Investigating the use of digital legacies with people diagnosed with MND and children in their family

Categories: Care.

Both my nan and dad had motor neurone disease (MND), so I’ve been through the journey myself and really want to help and support other children and young people who are affected when someone close has MND.

MND is often referred to as a ‘family disease’, meaning a whole household can be affected when an individual person is diagnosed.

To date, little research has investigated the experiences and needs of children and young people who provide care or are bereaved due to MND.

My research is investigating the use of purposefully recorded digital legacies with people who are affected by MND. This means people living with the disease will record a selection of videos specifically for children in their family regarding memories, accomplishments and personal messages.

These videos are then copied to DVD or digital source to be used by the young person for emotional support. This can then be watched whenever the child wishes to reconnect with the family member if they have passed away, or perhaps lost the ability to speak.

Creating a digital legacy for a child

There are many different programs that can be downloaded to help people create a digital legacy.

One program that I am raising awareness of is RecordMeNow. Although it is completely independent from myself and my study, it helps users create a digital legacy specifically designed for children. It is free to download (from the Apple App store or the RecordMeNow website) for anyone who wishes to leave a digital legacy for a child in their family, regardless of having a terminal diagnosis.

RecordMeNow is based on research that was carried out with 100 children and young people who had lost one or both of their parents before the age of 16. These young people were asked about the questions they wish they had answers to regarding the person who had died.

The app provides these unanswered questions as a selection of prompts to which the user can video record their responses using an iPad/iPhone, or computer and webcam.

These questions cover a range of areas such as childhood, family life, accomplishments and personal messages for the child. You can delete, modify or add to the questions that are provided and re-record the messages as many times as you wish before exporting them.

RecordMeNow is a not-for-profit organisation which is completely independent and any concerns about the app should be sent to

This also means that people do not have to participate in the research to create a digital legacy for a child in their family and can simply download the app from the website or app store.

My research

But if you are interested in talking about your experiences of creating/using a digital legacy, I am now recruiting research participants until April 2017.

I am keen to hear from people who:

  • Have MND and are interested in recording/ have recorded a digital legacy for a child or young person (eg son/ daughter/ grandchild/ niece/ nephew).
  • Are young people (aged 11-24) currently involved in caring for a family member with MND and use a pre-recorded digital legacy as a means of support.
  • Are young people (aged 11-24) who have lost a family member who had MND and use a pre-recorded digital legacy to support them as they grieve.

I am hoping to interview between five and ten people from each group to investigate their thoughts and experiences of being affected by MND and creating or using a digital legacy. The interviews will be informal and last around 30 minutes which will be carried out either face-to-face or via Skype.

For further information about this research, please contact me via email at

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