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.