TWEETING YOUR GRIEF: A WORKSHOP ON SOCIAL MEDIA AND GRIEF

Laura Rooney-FerrisInformation & Library Manager

#socialmediagrief

Preface

We could be on to something

This sounds like a job for two …

• Clinical Psychologist; over 20 years experience – specialist in bereavement. Interested in clinical implications and impact of social media use in bereavement

• Librarian; Interested in information seeking of bereaved via social media sites & digital legacy issues

• A self confessed facebook ‘lurker’ & non social media user • An enthusiastic early adopter & social media addict

Attendees professionals but wouldn’t necessarily have background or knowledge in either side of topic Broad learning outcomes adopted; • Be aware of different social media platforms & how they

are being used by bereaved • Be informed of pros & cons of social media as outlet for

the bereaved & tool for providing support • Encourage evaluation of current usage & policy around

social media

Structuring the workshop

Processes of grief ‘Phases of grief’ – Colin Murray Parkes (1986)

Our initial grief reactions …• Numbness • Searching & Yearning – seeking out the dead person & being

drawn to locations associated with them• Yearning for ability to communicate & make contact• Initial phase marked by disorganisation & Despair

Continuing Bonds – Klass et al (1996) • Debunks Freud’s claim that continued bond with dead is

pathological• Continuing a bond with a dead person a normal, adaptive &

comforting part of loss • 2006 revisit of ‘Continuing bonds’ outlined bonds as “collectively

held” involving social identities of the dead and of the survivors. Our adjustment to bereavement occurs in conversation.

Stroebe & Schut ‘Dual Process’ model

Meaning Making Neimeyer (2001) outlined how we create our identity through constructs. • Significant death requires reshaping of our self-narrative • Significant loss makes us search for significance in the loss • Attempt to re-establish a sense of self and a connection to

deceased loved ones • We need to make sense of loss in our own way

Durable Biography Sociologist Tony Walter (1996) examined the construction of a durable biography • Continue to integrate deceased into our lives, to find a ‘place for

them’• Do this by having strong sense of the person we’ve lost, one that

is shared by others • Durable biography socially mediated through conversation with

others

Meaning making & durable biographies

What we know about bereavement help seeking & support needs

1. Bibliotherapy, Websites & online resources. Family

& Friends Existing support systems

58.4 % Aoun et al 2015

2. Peer & community support groups

Volunteer led group support

35.2% Aoun et al 2015

3. Professional counselling 4. Complicated Grief

6.4%

Aoun et al (2015) Petrus et al, 2008, Irish Hospice Foundation (2012)

Social Media – Where does it fit in the mix ?

‘Social network sites as web-based services that allow individuals to (1) construct a public or semi-public profile within a bounded system, (2) articulate a list of other users with whom they share a connection, and (3) view and traverse their list of connections and those made by others within the system’ Boyd & Ellison (2008)

‘Social media have been defined as ‘a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, and that allow the creation and exchange of user-generated content’ (Kaplan & Haenlein M (2010)

Defining ‘social’ media

Social media account ownership in Ireland

Social Media bears witness – to life & death • Social networks offer connection across space & time • Social media platforms have naturally been appropriated as an

outlet for expression of death, dying and grief • Promotes a sense of intimacy - Gibson (2015) ‘global

public intimacies’

How social media is used by the bereaved - the evidence ‘Construction & comfort in communities developed through social

networks naturally moved to embrace grieving. Empirical research on use of social media after bereavement limited but growing’ Hieftje,K (2012)

How social platforms facilitate grieving

• Shared Grief despite geographic distance - Post Virginia Tech shootings Facebook became a forum for communications, updates and news as well as creating an online grief community

• Connect with appropriate community (especially for disenfranchised groups)

• Belonging – family the traditional chief mourners, online friends have

• In absence (or inability) to visit a grave the profile a Focal point for grief

• Continued communication & a way to ‘keep their memory alive’

Grieving in a crowd – Grief behaviour on Facebook

• Hieftje (2012) study with college students found the nature of Facebook posts & interactions with friend’s profiles post bereavement formed 4 categories – Connection, communication, commemoration & continuation of friendship’

• Kaskett (2012) mourning on Facebook differs from memorial websites in several ways, 1. Mourning takes place in the same ‘place’ or ‘space’ as formerly memorial site, and 2. interaction continues with the same co-constructed representation of self created during that person’s life not a new eulogised representation of the person

• For most this continued relationship through access to photos & videos of deceased a positive thing ‘for all but one participant the social networking web pages of their deceased friends provided an important way to connect, communicate, commemorate and continue a relationship with their deceased friends after death’ (Hieftje)  

Carroll & Landry study (2010) – Analysis of MySpace & Facebook memorial page posts

• 60% had visited the page of someone who died• 10% had posted to a memorial page• 8% had posted a message to deceased on their wall or friends page• 38% had joined a memorial group• 14% had changed their own profile photo in response to the death

Theme of posts • Visible symbol of grief 42• Mode for praise/admiration 38• Method of petitioning for help 31• Narrative/biography 28• Discourse on values/beliefs 15

YouTube – Confessional & advice sharing space

‘I hope I have made at least one person’s day better. If I can touch one person’s life in a positive way, I feel like I have achieved my goal’ JediFan421 ‘On the death of my Father’ https://www.youtube.com/watch?v=A5r11mvZWt0

• Gibson (2015) sampled YouTube vlogs on the death of parent • YouTube being incorporated as both outlet for feelings & a place

to seek community & advice • Like blogs they provide a real time window into processes of

grieving – moving from disorganisation & despair to meaning

• Grief behaviour across social sites consistent with bereavement theories (Dual Process, Meaning making, continuing bonds)

Identity – Social Media You

• Different platforms cater to different aspects of identity (Facebook = friends & family. Twitter = information gathering, professional development. LinkedIn = Professional

• Grief highly personal – social platforms allow our own Modes of address

• Adolescents use direct, second person“text-speak” rather than condolence –style prose & often seem to believe the deceased are receiving messages

“I know that you can read this, it sux that you cant talk back”

The persistent digital self

‘In the new world of thantotechnology, individuals want their ‘online soul’ preserved to create a ‘technology heirloom’ or even to continue to communicate after death’ Sofka, Cupit & Gilbert (2012)

Your social self without you • Facebook current user profiles = 1.35 Billion (as of 3rd

quarter 2014)• Based on number of users it is estimated 10 to 20 million

user profiles of people who have died • Based on current user figures Facebook will ‘crossover’ to

more dead than living profiles by 2065

Two Options 1. Turn the profile into a memorial page. This locks the account is

but other pre existing friends can still post comments, photos and links to the profile.

2. Remove or delete the account – request needs to be made by next of kin family member or executor

Facebook continues to change rules in relation to deceased accounts. As of Feb 2015 US account holders can now appoint ‘Legacy contact’ to administer account posthumously

Twitter • Deactivate account on the request of executor or a verified immediate

family member on provision of death certificate (can take time) • Does not allow access to account • Will remove images & content on request but at discretion of Twitter (if

content ‘newsworthy’ it remains) Google • ‘inactive account manager’ allows users to decide on posthumous

administration • If account holders do not designate an account manager no posthumous

access givenYouTube• Youtube is a Google product; Google policy applies• Google indicates unless designated account manager is assigned, next of

kin will rarely be granted access Email• Gmail & Hotmail grant access on fulfilment of conditions (not always

clear)• Yahoo has ‘No Right of Survivorship and Non-Transferability’ clause

Policies vary across sites

Digital inheritance• Lack of clear policies,

contact route to administer accounts posthumously & contact for complaints if wishes not carried out can be very distressing for next of kin

• Provision of access after death Further complicated by need to uphold privacy policy

• Thanatosensitivity – Movement to integration of procedures for posthumous access & administration of accounts by digital service providers (Echo's Tony Walters ‘Durable Biography’)

Social Media beyond the grave

• ‘Dead Social’ - send pre written messages after death • ‘If I die’ app sends a final message from your profile after

your death • ‘Legacy locker’ & other applications store passwords &

archive info • Archiving / memory preservation or cashing in on fear of

being forgotten ? • Digital legacies facilitate continuing bonds • Digital legacies have significant input into durable

biographies

Findings & learning

The Postmortem

‘I really enjoyed the workshop and learnt an awful lot from it it. It made me reconsider a lot of my opinions on the use of social media.’

‘This was a most informative, very sensitively delivered and useful seminar. I learned more than I have learned at any seminar in the last few years. Thank you’

‘It would be interesting to follow up on doing another course similar to this like a continuation’

‘A lot of new perspective on the various types of social media & how bereaved people are using them to positive effect’

The insight Before participants were like ….

Pre workshop• All felt social

media would have negative impact on grieving

• Felt bullying /negative behaviour more prevalent

• All cautious about ‘grieving online’

• None had thought about ‘digital legacy’

• Several had no social media accounts

• Those who did hadn’t thought about posthumous access

After ….

‘I’ll never give a leaflet to a grieving teenager again’

‘I feel a chink has been opened up & in my knowledge’

Will ask clients about whether they look at deceased social media pages

‘Will not be as judgemental about how & where people express grief’

Requiem - Evolution or Extinction

• Evidence so far shows online grief parallels offline model • Remains to be illustrated the extent to which established model for

bereavement support (58% 35% 6%) modelled in online environment • Time to look without prejudice at the ways people seek information,

support & connection in grief • IHF looking at forum activity & grief chats via Twitter – being where

people grieve

“Online grieving is neither good nor bad – its just where we are at” Kasket

It’s a conversation “Grief is the most patient and persistent of all of life’s companions. It is an ancient

universal power that links all human beings”.Molly Fumia; A Safe Passage

“The greatest appeal of Facebook groups is that no one wants to grieve alone”.

Respondent in Carroll & Landry study

Bereavement References• Aoun, S. M., L. J. Breen, et al. (2012) A public health approach to

bereavement support services in palliative care. Aust N Z J Public Health 36(1) pp 14-6

• Bates, U., Jordan, N., Malone, K., Monahan, E., O'Connor, S., & Tiernan, E. (2008). Review of General Bereavement Support and Specific Services Available Following Suicide Bereavement. Dublin: National Office forSuicide Prevention.

• Klass, D. (2006). Continuing conversations about continuing bonds. Death Studies. Vol 30 (9)

• Klass, D.,Silverman, P. R., & Nickman, S L. (1996).Continuing Bonds; new understandings of grief. London. Taylor & Francis

• National Institute for Clinical Excellence (2004) Supportive and palliative care for cancer with adults [Online] Available from: http://www.nice.org.uk/page.aspx?o=csgsp

• Neimeyer, R. A. (ed) (2001). Meaning reconstruction and the meaning of loss. Washington DC: American Psychological Association

• Stroebe, M., Schut, H., & Van Den Bout, Jan.(1994). Complicated grief; scientific foundations for health care professionals. Routledge, London

• Parkes, C. M. (1986). Bereavement; Studies of Grief in adult life. Harmondsworth Penguin

• Walter, T. (1996). A New Model of Grief Bereavement and Biography. Mortality. Vol. 1, No. 1

Grief & Social mediaBailey, L., Bell, J., & Kennedy, D. (2014). Continuing social presence of the dead: exploring suicide bereavement through online memorialisation. New review of hypermedia and multimedia.

Carroll, B. & Landry K. (2010). Logging on and letting out: using on-line social networks to grieve and to mourn. Bulletin of science, technology and society, 30 (5), 341-349.

Chapple, A & Zieband,S.(2010). How the internet is changing the experience of bereavement by suicide: a qualitiative study in the UK. Health

DeGroot, J. (2014) “For Whom the Bell Tolls”: Emotional Rubbernecking in Facebook Memorial Groups, Death Studies, 38(2) 79-84

Kasket, E. (2012). Continuing bonds in the age of social networking. Bereavement Care. Vol. 31(2)

Sofka, C., Gilbert, K. & Guppot, I. (eds) (2012). Dying, death and grief in an online universe. Springer. New York.

Williams,A. & Merten, M. (2009). Adolescents’ online social networking following the death of a peer. J of Adol Research, 24:69