Presented at CONUL conference, June 2016, Athlone, Ireland by Laura Rooney Ferris.

1. Laura 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

2. • 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

3. • 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

4. • Social media the
new obituary
source
• Changing avatars
to reflect /
commemorate loss
(Gottfried, Barthel
& Shearer Pew
research centre,
2016)

5. Everything you know about grief is wrong…sort of

6. • 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
/ integration
Disorganisation
Searching &
Yearning
Numbness &
shock
Restoration
Loss

7.  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)
‘Aint no shame
in holding on
to grief, as
long as you
make room for
other things
too’
‘Bubbles’ The
Wire

8.  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

9. 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%

10. • 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

11. • Natural Cycles
of Life
• Dr. Google &
Self Diagnosis
• Online
Answers for
Everything?

12. 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

13. 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.

14. • Previous &
ongoing
Research- Twitter
& Health
• What
#breastcancer
looks like on
Twitter research

15. • Eric Clarke’s
research
interests in
Bereavement
• Interest to see if
same
methodology
could be applied
• LIS/Teaching
Connection

16. • 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)

17. Tweets:
• 43,898 Grief
• 12,656 Bereavement
• 4,240 Grieving
URLs:
• 39,312 Grief
• 11958 Bereavement
• 3,612 Grieving

18. • 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

19. ‘‘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

21. Thank You!
Now Go Enjoy A Drink!

22. • 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