Digital Participation at the End of Life
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Transcript of Digital Participation at the End of Life
Digital Participation at the
End of LifeRachid Hourizi, Wendy Moncur,
Tony Walter
End of LifeBarriers to Digital ParticipationReducing BarriersResearch Directions
Introduction
Under 6666-8585+42%
44%
24%Age at End of Life
Projected UK longevity in 2030
Leadbeter, C. and Garber, J. Dying well. DEMOS, London, UK, 2010.
DeclineEnd of Life (EoL) likely to be preceded by:
Physical / cognitive decline Multiple conditions
At EoL, majority of people will be in a care institution* 60% in hospital17% in a care home5% in a hospiceOnly 18% at home
Physical/ cognitive decline accompanied by social declineYet social contact remains important
*Leadbeter, C. and Garber, J. Dying well. DEMOS, London, UK, 2010.
Can the “transformational impact of digital technologies on… community life”* alleviate social isolation:At home?
Carers may also be isolatedIn EoL care institutions?
Hospitals Care homes Hospices
Staying connected
* Research Council UK. What is the RCUK Digital Economy theme? 2011
Staying connectedIndividual at EoL may want to communicate
with:Core carers (small group of family/ close
friends)Wider support network
Family Friends Neighbours Colleagues Health & social care practitioners Spiritual advisors Third Sector organizations Lawyer
Web 2.0 resources adopted by some younger usersUsed to maintain social connections. E.g.:
Blogs Online support groups Social networking sites
But this is unusualBarriers exists to digital participation at EoL
Digital Participation at EoL
Barriers: Technology factorsPractical barriers through lack of:
Hardware & softwareBroadband accessTechnology literacy/ confidence
Majority of people currently at EoL are old not technology users
But this will change as current technology users ageSupport/ mentoring
Physical/ cognitive limitations associated with declineStaticDynamic
Progressive conditions changing user profile
Barriers: Physical/ Cognitive Constraints
Barriers: Stakeholder Interactions Interaction between core carers and wider
support network importantDeliver joined-up support to person at EoL
Healthcare, practical assistance, social/ emotional support
But Communication often poorly supported Information scattered
Amongst stakeholders Online & offline
Information not shared effectively
One size does not fit allNeed to tailor information provision to different
stakeholders
Older people anxious about threat to privacy via Internet
Doctors worry about: ConfidentialityPhysician-patient relationship
Barriers: Privacy concerns
ICT use by staff @ EoL care facilitiesAdmin toolTechnical support provided
ICT use by patients/ residentsNot part of their careTechnical support absentPerceived risk to moral
wellbeingMay be blocked by firewall
Barriers: Organisational culture
Quick winsEasier to circumvent barriers for younger
users Technology literacy Fewer privacy concerns
Increasing ubiquity & speed of wireless broadband access Internet access beyond the control of EoL Care
Organisations?Technology-literate users will be the “new old”
Reducing barriers
How can digital participation support social life of those near EoL? Address identified barriers:
Generate appropriate design practices Create tools to support digital social participation
Supplement existing practices and tools that circumvent the barriers
Take account of organisational concerns surrounding EoL data protection and privacy.
Research directions
Research in early stages
Currently collaborating with partners in elder care homes and hospices
Gaining deeper understanding of: Individual/ group interactions that can mitigate social
exclusion How ICT tools can support those interactions, tailored to
needs of: elderly/terminally ill their core & extended support networks.
Research directions
SummaryThose at EoL face unwanted social exclusion
Digital participation may reduce exclusionBarriers exist
Especially in EoL care facilities
We aim to initiate research into how digital participation can:Support social life of those near EoLAlleviate social isolation
The authors acknowledge the financial support of the EPSRC, grant no. EP/I026304/1.