Collaborating to trace conversations about bereavement on twitterLaura Rooney Ferris – Information & Library Manager, Irish Hospice Foundation

Jane Burns - Research Officer, School of Nursing & Midwifery, RCSI School of Information & Communication Studies, UCD

Eric Clarke - Lecturer in Health Informatics RCSI

Dr Richard Arnett - Associate Director of the Quality Enhancement Office RCSI

• Roughly 80 people in Ireland will die today • 2 will die by suicide

• 28,000 - 30,000 people die in Ireland on average every year • An average of 10 people directly affected by each death• Up to 300,000 people are affected by a death every year

We are the bereaved

• 700, 000 people log on to Twitter every day in Ireland

• We send 1 million tweets per day as a nation

• 26% of Irish people over the age of 15 use Twitter

• 92% of Irish Journalists use Twitter every day

Social media has changed the way we live …and die

New rituals of mourning

• Social media the new obituary source

• Changing avatars to reflect / commemorate loss (Gottfried, Barthel & Shearer Pew research centre, 2016)

Everything you know about grief is wrong…sort of

Phases & dual processing

• Acute phase of grief marked by numbness, searching in places associated with the person

• Over time loss is integrated & we reorganise our lives • Stroebe & Schut (1999) ‘Dual process’ of moving in & out between restoration & loss

Reorganisation / integrationDisorganisation Searching &

Yearning Numbness &

shock

‘Phases of Grief’ & ‘Dual Processing’

Restoration

Loss

Continuing bond a normal, adaptive, comforting part of loss (Klass 1996 & 2006)

‘Continuing bonds’ are “collectively held”

Adjustment to bereavement occurs in conversation & in our natural communities (Twitter)

‘Continuing bonds’

‘Aint no shame in holding on to grief, as long as you make room for other things too’ ‘Bubbles’ The Wire

Meaning Making Identity and the way we

construct it influences our grieving (Neimeyer 2001)

Significant death requires reshaping of our self-narrative

Personal identity & how we shape it plays a part in how we grieve

Constructed identity plays significant part in social media self-presentation (Marwick & boyd*, 2010)

*Yes that’s intentionally lower case

What we know about bereavement help seeking & support needs

Aoun et al (2015)

1. Bibliotherapy, Websites & online resources. Family & Friends

Existing support systems 58.4 %

2. Peer & community support groups

Volunteer led group support

35.2% Aoun et al 2015

3. Professional counselling 4. Complicated Grief

6.4%

Listening in • IHF promote public

conversations on death dying & bereavement

• ‘Social contagion’ we trust information shared & sent within social groups

• Potential ‘tainting’ of health messages on social media (Coiera, E 2013)

• Tracking twitter conversations

• Solo Librarians like to collaborate! Pre -existing relationship between IHF & RCSI

So you want to Live Forever? • Natural Cycles

of Life• Dr. Google &

Self Diagnosis• Online

Answers for Everything?

Why Collaborate?Great opportunities to learn new things & new approaches.

RCSI has ethos of collaboration within the College and Externally

Stakeholders in Health are vast and varied

J.Burns, E. Clarke, G. Cavalleri & R. Arnett

What’s in it for RCSI? Health is not confined to the

traditional Medical Profession alone

Death & Dying are the predicable outcomes for every patient (at some point)

Grief and Bereavement impact on a persons physical and psychological well being

Opportunity to work with a specialist organisation in this area.

How did this collaboration happen?

• Previous & ongoing Research- Twitter & Health

• What #breastcancer looks like on Twitter research

How did this collaboration happen?• Eric Clarke’s

research interests in Bereavement

• Interest to see if same methodology could be applied

• LIS/Teaching Connection

Mining for meaning

• Enter Eric & Richard • Quantity - Extract 90

day archive (quantity)• Quality – Extract URLs

& review type of content shared

• Who is tweeting – top profiles & most retweeted

• What is tweeted (URL extraction)

125 days of grief Tweets: • 43,898 Grief • 12,656 Bereavement • 4,240 Grieving

URLs:• 39,312 Grief• 11958 Bereavement• 3,612 Grieving

Initial Findings • Commercial interest • ‘Lifestyle’ gurus –

meditation, motivation, mommy bloggers & life coaches & ‘Spiritual’ advisers

• Personal narratives of grief, blogs

• Strong influence of ‘Micro celebrity’ and personal branding

Meaning Making

‘‘hopefully this blog not only helps us as a form of therapy, but can shed a small bit of light on someone else’s dark – or just help to raise awareness of grief, bereavement and stillbirth’

Legacy for Leo Blog

Sorry about all the death

Here’s some Goats in Coats

Click icon to add picture

Thank You!Now Go Enjoy A Drink!

References • Aoun S, Breen L, Howting D, Rumbold B, McNamara B, Hegney D (2015) Who Needs Bereavement Support? A Population Based Survey of Bereavement

Risk and Support Need. PLoS ONE Vol. 10 (3) [online] Available at http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0121101

• 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 Vol. 21 (1-2) p 72 -86

• Burns, J., Clarke, E .& Arnett, R.. (2015) Twitter & Academic Healthcare Content, More Noise than Signal? Presentation HEAnet National Conference, November 2015 [online] Available at https://www.heanet.ie/conferences/2015/talks/id/196

• Coiera, E. (2013) Social networks, social media and social diseases. BMJ Vol. 346[Online] Available at http://www.bmj.com/bmj/section-pdf/187924?path=/bmj/346/7912/Analysis.full.pdf

• Gottfried, J., Barthel, M. & Shearer, E. (2016) Changing a social media profile picture is one way to express support or solidarity. Pew Research Centre [Online] Available at http://www.pewresearch.org/fact-tank/2016/03/28/changing-a-social-media-profile-picture-is-one-way-to-express-support-or-solidarity/

• Irish Hospice Foundation (2016) Strategic Plan 2016 -2019. Dublin : Irish Hospice Foundation [Online] Available at http://hospicefoundation.ie/wp-content/uploads/2016/05/Irish-Hospice-Foundation-Strategic-Plan-2016-2019.pdf

• Klass, D. (2006) Continuing conversations about continuing bonds. Death Studies. Vol 30 (9) pp 843 -858 • Klass, D.,Silverman,P.& Nickman,S (1996) Continuing Bonds; new understandings of grief. London: Taylor & Francis

• Marwick, A. & boyd, d. (2010) I tweet honestly, I tweet passionately: Twitter users, context collapse, and the imagined audience. New Media & Society Vol. 13 (1) pp 114-133

• Neimeyer, R. (2001) (Ed) Meaning reconstruction and the experience of loss. Washington D.C : American Psychological Association

• Stroebe, M., Schut, H.(1999) The dual process model of coping with bereavement: rationale and description. Death Studies Vol. 23 (3) pp 197 -224

• Park, H., Rodgers, S. & Stemmle, J (2013) Analyzing Health Organizations' Use of Twitter for Promoting Health Literacy. Journal of Health Communication, Vol 18 (4) pp 410-425

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