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![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,
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Pres 4 laura rooney ferris - social media & grief
- 1. TWEETING YOUR GRIEF:A WORKSHOP ON SOCIAL MEDIA AND GRIEF Laura Rooney-Ferris Information & Library Manager #socialmediagrief
- 2.
- 3. We could beon to something
- 4. This sounds likea 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
- 5. Attendees professionals butwouldn’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
- 6. Processes of grief ‘Phasesof 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.
- 7. Stroebe & Schut‘Dual Process’ model
- 8. 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
- 9. What we knowabout 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)
- 10. Social Media –Where does it fit in the mix ?
- 11. ‘Social network sitesas 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
- 12. Social media accountownership in Ireland
- 13. Social Media bearswitness – 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’
- 14. How social mediais 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)
- 15. How social platformsfacilitate 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’
- 16. Grievingin a crowd– Griefbehaviouron 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)
- 17. Carroll & Landrystudy (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
- 18. 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)
- 19. Identity – SocialMedia 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”
- 20. The persistent digitalself ‘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)
- 21. Your social selfwithout 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
- 22. Two Options 1. Turnthe 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
- 23. Twitter • Deactivate accounton 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 given YouTube • 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
- 24. Digital inheritance • Lackof 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’)
- 25. Social Media beyondthe 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 ?
- 26.
- 27. The Postmortem ‘I reallyenjoyed 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’
- 28. The insight Before participantswere 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
- 29. After …. ‘I’ll nevergive 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’
- 30. Requiem - Evolutionor 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
- 31. It’s a conversation “Griefis 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
- 32. 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
- 33. Grief & Socialmedia Bailey, 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
Editor's Notes
- #3 The inspiration for developing the workshop came as so many great things do – from sensationalist headlines. This is an area that is ripe for sensationalism. Though there is an amusing amount of OTT stories – there is a growing body of research examining the ways social platforms are being co-opted into the bereavement experience & how digital legacy impacts on grieving.
- #4 As part of our range of education offerings IHF run a series of one & 2 day workshops for professionals on various aspects of bereavement. The workshop offerings are built on a core set of topics.
- #5 Examination of social media & bereavement theory brings together a number of different disciplines – Psychology, Communications, information theory, sociology. We were also bringing together two different styles of working & presenting.
- #6 We worked initially on our individual areas of specialism with Susan taking the psychocological impact & I took the overview of social platforms, identity & social media and digital legacy. We came together in early January to put rough structure together and again in early March to plot out the running & pacing of the day. We had broad learning outcomes;
- #7 Bereavement theory has moved on significantly from Kubler-Ross’ ‘Stages of Grief’ approach. Murray Parkes , psychiatrist at St Christopher’s hospice in his work in 1980’s took Bowlby’s attachment theory as basis for his map of ‘phases of grief’. Acute grief phase is marked by searching & yearning for the deceased. In this phase we seek out the dead person, we look for them in the places we associate with them – visiting graves, looking at images of the dead & yearning to continue communication. We know they are gone but continue to search. -Denis Klass’s formulated the ‘continuing bonds’ approach. He debunked the Freudian notion that to continue to have a bond with the dead was pathological. Instead he sees it as a natural adjustment to loss as we adjust to a bond held in memory. Death ends a life , not a relationship. This continued relationship is based on the constructed identity of the dead person & the bereaved come to terms with their loss through conversation & sharing
- #8 So the process of grieving, rather than being linear is more one of moving in and out of grief – oscilating back and forth between the work of grief & the new role & relationship without the dead person
- #10 Irish Hospice research in 2014 found over 50% of population report ed recently bereaved of a person important to them (IHF/Weafer, 2014) . A 2012 IHF SURVEY showed one fifth of people reported not getting the support they required & 20% also were surprised at their bereavement reactions (Behaviousr & Attitudes, 2012). Research literature increasingly notes that between 7 to 10% of people will experience significant mental health difficulties in their loss; a further 25% benefit from some external guidance and help through peer or voluntary supports and the remaining two thirds while experiencing ‘normal’ grief require to be met with care and compassion in their natural communities. (Aoun et al, 2015) . Where are this majority of people going to seek help in bereavement …increasinlg online & to social media
- #12 Though websites focusing on grief & bereavement are not new - We were clear to define that we were looking specifically at ‘social’ platforms. We defined these as sites facilitating profile development, communication with & development of a community to connect with
- #13 Social media usage on Increase in Ireland - 63% on Facebook, 26% Twitter, 24% Linkedin Daily usage – 70% use Facebook daily, 47% Instagram & 37% Twitter Social media an intrinsic part of daily life
- #14 As lives lived increasingly online & via social platforms is natural that death & bereavement will be expressed – the lived experience of individuals day to day will be painted on their social feeds. ‘lifts the veil’ brings us into the intimate immediate experience. Social media has opened up a direct communication channel – a means to broadcast the intimate on a global scale The real time nature of social
- #15 So how exactly do the processes and phases of grief display via social channels? How are the bereaved using social platforms to seek comfort, community & solace in bereavement. Are there parallels with the literature and models of bereavement behaviour? We looked at studies on bereavement and social media and at social media content related to grief to see how the bereaved were using social channels.
- #16 Nobody wants to grieve alone. Social platforms area place for shared grief
- #18 Facebook takes the place of an obituary & visit the page the new ritual
- #19 YouTube ‘how to’ videos increasingly used as first place to find a way to do something – can be seen with grief also
- #20 We grief as we live – for heavy users of social platforms this will mean their social profiles are automatically where they seek information, comfort & support. Our grief is as highly personalised as our usage of social platforms. This can be very important for disenfranchised grievers. Social platforms provide a powerful route to our own narrative of our grief.
- #21 Equally the digital self we leave behind is a manifestation of the self constructed digital identity we have created – social media provide a powerful means of self expression, of identity creation and these are the elements of us that will live on. For heavy users of social platforms the knowledge this self will persist is comforting. It is also comforting for those we leave behind
- #28 The workshop had 18 participants, most from a psychology & counselling background but also several educators including a principle of a primary school and communication, admin & fundraising staff from national charities. Participants were very engaged on the day, sharing professional experience and their post workshop feedback was very positive
- #29 In our end of day round up
- #31 Time to move on from prejudice about the use of social media for grieving – may not approve but is where many choose to seek support. So far evidence shows online grief mirrors. Will always be detracters ‘h8ers gonna hate’
- #32 People just want to connect – especially when coping with grief – social media offers a platform for them to do that. If you are on the receiving end …ENGAGE!