2nd Scottish Schools Conference
WORKSHOPS
Monday 6th March 2017
Join the conversation on Twitter, tweet us @cbukhelp along with
the conference hashtag: #scotSchoolsConf
Social Media and Grieving Digitally
Wendy Lewis-Cordwell
Child Bereavement UK
Opening thoughts………
Our digital footprint /
legacy
Life & death on
Facebook
Grief processes, offline
& online
Implications for
schools
Support
What is our Digital Footprint
Our digital footprint
becomes our digital
legacy
What remains of us
digitally when we
die
Digital Footprint
We are all leaving increasingly large
and complex ‘digital footprints’
behind
‘Digital natives’, such as this 7-yearold, build them big and build them
early
‘Digital Migrants, such as Grandad,
starting to build his footprint
‘Digital Legacy’
The way in which we live and
communicate changed forever
Future generations will be
able to click on our profiles
and check what we were
doing on today
A place for the living to learn
more about their ancestors
Bereaved parents will,
increasingly, have access to
rich digital representations of
their child/children
Social Media …….……
How many users on the internet worldwide…
3,581,080,000 - 04.03.2017 and rising 10 every second
In UK 46.9 million adults (over 16) in the UK - 87.9%
1
Understanding this powerful dimension……
Patient blogging:
• Personal websites
(www.lumponablog.com)
• General websites for various
illnesses (The Patient
Experience, etc)
• Disease-specific websites
Bereavement support
communities (Griefnet)
Online cemeteries/virtual
memorials
(WorldWideCemetery)
Grief blogs
(livingwithmomscancer.blogspot
.co.uk)
“Repurposed” social
networking profiles (FB
Timelines) or in-memory-of
pages
Bereavement in online
communities
Attending funerals remotely
“Digital legacies” of the
deceased and “persistent
digital presence”
Life and death on facebook………
If Facebook were
a country
it would be the
rd
3 largest in the
world
Children on Facebook: The reality……….
In 2011, 7.5 million children under the age of 13
were using the site, including more than 5 million
under the age of 10 (Consumer Reports)
Violating age restrictions through lying is common:
44 % of online teens admit to lying about their age
so they could access a web site or sign up for an
online account
Parental awareness/facilitation is common
Livingstone, Olafsson & Staksrud (2013) summarise levels of
children’s usage in 2013
Dr. Elaine Kasket, C.Psychol.
Regent’s University London - June 2015
Dead people on Facebook
In the fourth quarter of 2016,
1.86 billion Facebook users
overall
In 2012, there were an
estimated 30 million profiles of
the dead on Facebook (Kaleem,
2012 in the Huffington Post)
Facebook could become a
digital graveyard
Sometime, between 2060’s and
2130, there will be more dead
people on FB than living ones
FB legacy contacts - UK 27.07.2015…
Legacy contacts CAN
appoint a friend or loved one to maintain their social media
account when they die
update the profile picture and cover photo
download and archive
Legacy contacts will NOT be able to:
see private messages
edit what the deceased already posted
what friends continue to post on the page
remove tagged images
delete the account
Facebook after death……..
Grief processes………
Searching and calling……
The urge to search for the
person who has been lost –
restless seeking and
scanning
The urge to locate the dead,
feeling most drawn those
parts of the environment
where that person may most
likely be found
The urge to call to the lost
person – to communicate and
make contact
‘When someone is lost the
most natural place to
look for them is the
place where they were
last seen’
- (Parkes & Prigerson,
2010)
‘Oscillation’
The dual process
model of grief (Stroebe,
Schut, and van den
Bout, 1994) - oscillation
between mourning and
their ongoing life and its
demands
Oscillation between
approach and
avoidance
Forming a “durable biography”
Purpose of grief is to
construct a durable
biography that allows the
survivors to continue to
integrate the deceased into
their lives (Walter, T 1996)
For the place of the
deceased to be stable and
secure, the image of the
deceased needs to be
reasonably accurate
Process through which this
occurs is conversation with
others
‘Survivors typically want
to talk about the
deceased, particularly
those who knew the
person
They are then able to
construct a story which
places the dead person
within their lives………..’
- (Walter, T 1996)
On Death and Dying - Elisabeth Kübler-Ross
5 stages of grief:
 denial, anger,
bargaining, depression
and finally, acceptance
‘In the digital age’ do
we need to add another
step – ‘posting on ‘wall’
of the deceased’?
‘Internet as facilative’
In the immediate aftermath of the death and beyond, mourners can
readily search out, locate, and contact the dead via Facebook
profiles – ‘[the Internet] is rapidly becoming the first place
where bereaved people will seek for help’ (Parkes & Prigerson, 2010, p.
239)
Communication with other mourners who knew the deceased
is facilitated
Accessibility of Facebook facilitates ‘oscillation between
mourning and engagement’ in everyday life
When digital legacies are left behind, this may facilitate
‘continuing bonds’
The person leaving behind any visible/accessible ‘digital legacy’
has significant input into their durable biography
Dr. Elaine Kasket, C.Psychol.
Regent’s University London - June 2015
‘Digital Age has changed how many of us grieve’
‘facebook has great potential
… but also huge risks’
Increasingly common to find
out someone has died
provide relief for someone
adrift with grief
hard to comprehend sharing
such a private emotion so
publicly
platform of support and ongoing memorial
…and problematic?
Negative reactions to death notifications via
social media
Marginalisation (isolation/unimportance) of
mourners
Management of the “digital legacy”
Concerns about mourners who connect
online
Internet “trolling”
…..once something is posted online?
you do not control the information or who knows about it
who is going to see it and make a comment on it
people cannot help themselves but read the comments
If you are telling a friend in the playground that your dad
has died and they say something you don’t like, you can
turn away
when online, you do not get to choose who to edit out of
negative reactions to death notifications via social media
David Trickey 4th Oct 2014
…but positive too?
social media helped us say goodbye
reading about other similar losses
helps the grief process
virtual funerals
memorial pages
celebration of anniversaries / birthdays
Memories / photographs
The value of social media as places for
bereavement – Digital Death Survey 2015
If someone you care about dies how important is it for you
to be able to view their social media accounts
Digital Death Survey
16%
31%
A little important
Important
24%
Very important
Not important
29%
Survey by www.digitaldeathorganisation.org
Implications for schools……
Increasingly become the rule……..
Need for recognition of how this
will increasingly be the rule
rather than the exception and
acceptance of what is..…..
Need for reflexive awareness
and bracketing of any personal
negative reactions which may
provoke (e.g., “how terrible to
have to learn of the death in
such a way”) – what informs
these?
Need for awareness of positives
of learning about a death in this
way, e.g., immediate access to
community support
Responding to marginalised mourners
Need for awareness that traditional “inner circle”
mourners (e.g., immediate family) may feel
excluded – formerly disenfranchised mourners
(e.g., friends) may have privileged access to
persistent digital self of the dead individual
Need for awareness that admittance to Facebook
(e.g., via friends) may feel distressing or confusing
to families – new understandings or bits of
information about their loved one may emerge and
need processing
Being sensitive to tension between families
Need for awareness of ways tension can manifest
online
Struggle for “chief mourner” position (e.g., competing
“in-memory-of” sites amongst groups of friends or
individuals)
Wrangling over right to manage dead person’s
legacy/image – either to edit the biography or…
…to remove the Facebook profile altogether
Different expression of grief……
more people to be involved in the grieving process
without imposing on immediate family and friends
but makes them aware of ‘the larger community of
support’
families can invite people to the funeral through social
media
people want to talk about the person – social media
easier than face to face
share feelings, memories and photographs…
Being familiar with re-traumatisation through
profile removal
Need for awareness of
how mourners may
experience profile
removal
need to assist young
people, living with the
anxiety of this possibility –
or parents with choices
about removal
Helping people manage their relationship
with profile
The profile will continue to sit
alongside the profiles of living friends
Ease of access through mobile
technologies – benefits and drawbacks
‘Defriending’ a deceased loved one
may feel complicated and upsetting
Status updates may continue to
appear in news feed ‘on-memorialised’
profiles (e.g., memories, birthday’s,
someone posted on their wall), some
may experience as difficult / but others
get comfort from remembering
Knowing about (emerging) ‘norms’…
Understanding what seems to be
typical in the following areas can
help identify and address what
may be atypical problematic /
complicated grief:
Belief in communications
reaching the deceased
Visits to profiles – frequent, over
long terms
Incorporation of visits and
communications into everyday
life
Ref: Carroll & Landry, 2010
Hieftje, 2012; Kasket, 2012
Addressing concerns about mourners….
Need to be aware of common concerns:
‘he/she is in denial’
‘it’s creepy/concerning – he/she still check the
Facebook profile’
‘he/she need to let go and move on’
‘the informal way his/her friends express
themselves on their timeline is inappropriate –
some of it is even obscene!’
Remember once posted online……
you do not control the information or who knows about it
who is going to see it and make a comment on it
people cannot help themselves but read the comments
If you are telling a friend in the playground that your dad
has died and they say something you don’t like, you can
turn away
when online, you do not get to choose who to edit out of
negative reactions to death notifications via social media
David Trickey 4th Oct 2014
What are your biases…......
What are your biases/beliefs/emotions/attitudes
around the digital age and social networking?
How might these affect your work with
individuals for whom continuing their bonds on
Facebook is important/a significant part of their
process?
What reflexive practices can you engage in to
help you to unpack and to monitor these?
Discussion…......
What are the advantages / disadvantages
about social media?
What do you find problematic in your school?
What are your strategies for coping with
grief/bereavement in the digital age
Where do you get your support?
Looking after yourself
Accept your need for support, both practical
and emotional
Be aware of what support is available to you
Establish who is going to provide this
Take responsibility for asking for what you
need
DENT & STEWART 2004
Helpline: 0800 02 888 40
Our website
www.childbereavementuk.org
Grief: Support for Young People
Resources 1 ……….
Managing a deceased person’s account on FB…….
How to report a deceased person or an account
on FB that needs to be memorialized?
How do I request content from the Facebook
account of a deceased person?
How do I request the removal of a deceased
family member's Facebook account?
What should I do if a person who has died and is
showing in People You May Know, ads or birthday
reminders on Facebook?
https://www.facebook.com/help/275013292838654/?helpref=hc_fnav
Resources 2……….
Bereavement Care, 31(2),
Summer 2012 issue
www.childnet.com/sns
www.internetmatters.org
Resources 3 ………..
UK Council for Child Internet Safety (UKCCIS) …….
https://www.gov.uk/government/groups/uk-council-for-childinternet-safety-ukccis
People may forget what you said.....
but they will never forget how you
made them feel
0800 02 888 40
Email: [email protected]
@cbukhelp
@WLewisCordwell
www.childbereavementuk.org
Useful links
http://www.dyingtomakeadifference.com/the-conversation-games/100.htm
https://www.verywell.com/how-card-games-can-help-start-end-oflife-conversations-4047376 - article from USA
http://childhood101.com/2013/05/printable-conversation-cards/
http://www.gowish.org/gowish/gowish.html
http://www.dyingtomakeadifference.com/the-conversation-games/100.htm
Additional Information
•
Dying to know - Bringing death to life
https://www.amazon.co.uk/d/Books/Dying-Know-Bringing-Death-Life-Andrew-Anastasios/1740665538
Highly recommended book - with the Emotional Will tucked into the back cover - a VERY
helpful resource to help anyone reconnect with the real values of relationships i.e. parent/child
etc, rather than monetary value of Wills. Great teaching tool - every page has a different
photograph relating to adults and children.
•
Winston's Wish Charter for Bereaved Children - http://www.winstonswish.org.uk/wpcontent/uploads/2017/02/Charter-for-bereaved-children-2016.pdf
This may help teachers develop a school Bereavement Support Policy.
•
Helpful Quote - “How can professionals become more effective?”
“...one has to have examined one’s own feelings and fears about death and one’s own
responses to loss or possible loss. Our own sadness and despair, and so our empathy, will
greatly enhance the care we can give to our patients.” Beverley Raphael (Australian
Psychiatrist)
•
SAD - Support Around Death NHS website for professionals http://www.sad.scot.nhs.uk/bereavement/bereaved-children/
Supporting Children with
Life Limiting Conditions
Workshop 4 – information, quotes and ideas to
initiate group discussion and
sharing of best practice...
Facilitated by
Dawn Allan
Spiritual Care Lead
NHS Dumfries & Galloway
“Do not regret
growing older.
It’s a privilege denied
to many”
(unknown quote)
Children and young people need to
talk about death...
 Very young children facing a terminal diagnosis can find it
overwhelming – older children and young people like to
know what is happening so they can plan and be in
control of what future they have.
 They all need trusted people around them who...
KNOW them, LISTEN to them, SUPPORT them and carry out
THEIR wishes – this enables their peace of mind that during
their last days and after they have died, that what THEY
wished will have been implemented.
From the mouths of babes...1
 We want to focus on living, not dying.
 We need support to be able to live.
 It’s going to happen so you have to deal with it. It’s going
to happen to everyone.
 When the condition progresses, people start saying that
you shouldn’t do this or that, but I disagree.
 I don’t want to dwell on death, because you can achieve
so much in a short life.
From the mouths of babes...2
 We’re all different, having different outlooks,
different feelings and understanding of our
conditions. No two of us are the same – I’d want
them [adults/professionals] to talk to me about end
of life in the same way they’d want to be talked to;
they need to put themselves in the person’s
[child/young person] position.
Lessons Learned from children and
young people...
 Use plain and simple language.
 After a conversation follow up with information and/or
other options like an opportunity to talk to someone else.
 See them as a whole person – offer additional support
e.g. spiritual/emotional/psychological.
 Leave ‘the door’ open for further discussion,
opportunities in the future – time for reflection and
filtering of information will differ from child to child.
 They may change their mind after initial decisions.
Lessons Learned from children and
young people...
 Every family member is significant and will be affected by




a life limiting condition/diagnosis.
Every family member needs a chance to be heard, to
voice their fears, hopes and opinions.
Families need to know they have done everything they
can and shouldn’t be ignored/overlooked but valued.
How they are supported by professionals will affect their
future journey of ongoing grief.
An advocate, person outside of the family can help bridge
conversations between child and family if needed.
“Worrying does not empty
tomorrow of its troubles...it
empties today of its
strength”
• Mary Engelbreit
References:
Difficult Conversations – making it easier to talk about end of life issues with
young adults with life-limiting conditions
http://www.togetherforshortlives.org.uk/news/7838_difficult_conversations_for_young_adults
Children & Grief Film Trailer by Professor Child https://www.youtube.com/watch?v=dfjgWDSFjxM
Pinterest/YouTube