This presentation is a resource developed as part of a ... · Digital Legacies Digital Legacy this...

This presentation is a resource developed as part

of a face to face education event or workshop.

The target audience is health and social care

professionals in roles providing palliative and end

of life care

The author/facilitator has agreed to share the work to

enable best practice in the provision of end of life care

Jenny Hall Bereavement Service Co-ordinatorNaomi Davey Marketing and Communications Apprentice

Death In the Digital Age

Learning Objectives

• Impact of social media on bereavement and thegrieving process

• Legalities and practicalities surrounding death and social media

• Enable you to confidently discuss the subject professionally and personally

What is bereavement?

Please write on a post-it note your definition of bereavement in one sentence.

Bereavement

This is the state of being robbed of a close and meaningful relationship, health status or possession…

Grief

…is the emotional response to that loss

Grief is a process which is expressed in different ways and at different times, and

consists of a number of intertwined processes: physical, psychological,

emotional, spiritual, social and cultural.

• Denial

• Anger

• Bargaining

• Depression

• Acceptance

Kubler Ross (1969)

Stages of griefStages of grief

Grief….

…is a universal experience

Mourning

…is an outward expression of grief that has social and cultural components

Why Mourning Rituals Matter

•

• Marker in time

• Provide a positive focus

• Restore feeling of control

• Sense of meaning

• Chance to say goodbye

• Many bereaved want to talk to others who knew the dead person

• Talking and expressing feelings is helpful

• The purpose of grief is not to move on without the dead but to find a secure place for them

• For a secure place, the image of the dead needs to be shared by others

Digital Legacies

Digital Legacy this is the information about that person that remains afterthey die.

Digital Assets are possessions made from computer code i.e. digitalphotographs, documents, videos, and purchased music or movie files. Theycan be stored on cloud services like Facebook, Twitter, Instagram andDropbox. They can also be saved on digital devices like laptops, computersand mobile phones.

The Digital Legacy Association provides support to professionals and thegeneral public through advise, training, campaigning, awareness-raising,support literature, lobbying and online tutorials.

www.digitallegacyassociation.org

Memorialisation in the Digital Age

• Public

• Private

• Communal

Motivation

• A way to cope with grief and loss

• Allows for active participation in the process

• A way of completing unfinished business

• Having conversations with the deceased - a ‘living’ social presence

• Maintenance of the past as a living memory/historical significance

Characteristics

• Remembrance - textual and visual

• A surrogate for the dead - are photo montages and biography the new headstones?

• Display of kinships - clear familial relationships and social context

Benefits

In small groups discuss the possible advantages and disadvantages of using

social media/the web for memorialisation.

Benefits -Summary• Remembrance - are photos, videos,

soundclips etc better?

• Timeliness - quick content creation, unlimited editing, ability to update, not subject to physical degradation, can be an intermediary until a physical memorial is erected. Immortality despite physical death.

• Cost - free if using social media, small fee for “web cemeteries”

• Accessibility - more open and available to wider group of mourners who may be scattered across the globe or physically unable to attend funeral/visit grave

• Creativity - more possibilities

• Avoids disenfranchised grief - all relationships can be honoured e.g. friends, pets

• A space for ‘continuing bonds’ - can tend it like one would tend a grave

• Creates a sense of community - belonging to a group of mourners

Disadvantages -Summary

• Inferior to physical memorials?

• The bereaved may feel their loved one is

where their remains are.

• Interactive nature - requires less memory and imagination of the living. Their memories may be created for them?

• Selective memories - an overly positive portrayal? Legacy may be troubling for some bereaved

• Conflict over access and control - power struggles/difference of opinions

• Loss through erasure, breakage or data corruption - traumatic second loss

Bereavement Support in the Digital Age

• Widownet.org – information and online forum for those who have lost a spouse

• GriefNet.org - e-mail support groups organised by type of loss and age of the bereaved

• Bereavementuk.co.uk – online support forum and chat room

• AtaLoss.org - online directory of support by type of loss and geographical location

Easily accessible!

Beyond The Grave

• Social media will template

• Discuss your wishes regarding your digital legacy

• Create a ‘go to’ box containing relevant information

Make decisions about your digital legacy now!

Film Link: https://medium.com/macmillan-press-releases-and-statements/talking-about-death-can-be-life-changing-for-those-you-leave-behind-says-charity-3fd0ca862dfa LTAD2019

Talking About Death

Digital Legacy Conversations

Six things to consider:

1) Start and encourage conversations2) People are already accumulating digital assets3) Discuss specific platforms and their procedures4) Highlight the importance of passing on passwords/account ownership5) Discuss making a ‘social media will’6) Do some research - together or for them

In 2018 the Digital Legacy Association wrote an article arguing that digital legacy conversations should be included as part of all Advance Care plan conversations.

…are difficult!

Facebook

• What will happen to my Facebook account when I die?

• How do I request the removal of a deceased family member’s Facebook account?

• How do I report a deceased person or an account on Facebook that needs to be memorialised?

• What is a legacy contact for my Facebook account and how do I manage this?

Twitter

• How to contact Twitter about a deceased family member’s account…

• How do I get this account removed?

• Can I memorialise a Twitter account for a loved one who has died?

Instagram

• How do I report a deceased persons account on Instagram?

• What happens when a deceased person’s account is memorialised?

Your Digital Toolkit

Your ‘Digital Toolkit’ will give you a brief overview of the steps that social media provide you with to make the decisions that are right for you when it comes to managing a loved ones account.

Resources

https://digitallegacyassociation.org/social-media-will-template/

https://digitallegacyassociation.org/wp-content/uploads/2016/06/Digital-Legacy-Association-Sorting-Out-Your-Digital-Assets-and-Digital-Legacy.pdf

https://www.dyingmatters.org/sites/default/files/files/Digital%20Legacy%20Fact%20sheet%20for%20Dying%20Matters%20(Autosaved).pdf

https://digitallegacyassociation.org/

References

Roberts P (2009) Here Today and Cyberspace Tomorrow: Memorials and Bereavement Support on the Web in Earle S, Bartholomew C and Komaromy C (ed) Making Sense of Death, Dying and Bereavement: An Anthology The Open University

Veale, K (2009) Reasearching Death Din Earle S, Bartholomew C and Komaromy C (ed) Death and Dying: A Reader The Open University