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Digital Participation at the End of Life

Digital Participation at the End of Life. Rachid Hourizi, Wendy Moncur, Tony Walter. Introduction . End of Life Barriers to Digital Participation Reducing Barriers Research Directions. Projected UK longevity in 2030. Leadbeter, C. and Garber, J. Dying well . DEMOS, London, UK, 2010.

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Digital Participation at the End of Life

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  1. Digital Participation at the End of Life Rachid Hourizi, Wendy Moncur, Tony Walter

  2. Introduction • End of Life • Barriers to Digital Participation • Reducing Barriers • Research Directions

  3. Projected UK longevity in 2030 Leadbeter, C. and Garber, J. Dying well. DEMOS, London, UK, 2010.

  4. Decline • End 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 hospital • 17% in a care home • 5% in a hospice • Only 18% at home • Physical/ cognitive decline accompanied by social decline • Yet social contact remains important *Leadbeter, C. and Garber, J. Dying well. DEMOS, London, UK, 2010.

  5. Staying connected • Can the “transformational impact of digital technologies on… community life”* alleviate social isolation: • At home? • Carers may also be isolated • In EoL care institutions? • Hospitals • Care homes • Hospices * Research Council UK. What is the RCUK Digital Economy theme? 2011

  6. Staying connected • Individual 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

  7. Digital Participation at EoL • Web 2.0 resources adopted by some younger users • Used to maintain social connections. E.g.: • Blogs • Online support groups • Social networking sites • But this is unusual • Barriers exists to digital participation at EoL

  8. Barriers: Technology factors • Practical barriers through lack of: • Hardware & software • Broadband access • Technology literacy/ confidence • Majority of people currently at EoL are old  not technology users • But this will change as current technology users age • Support/ mentoring

  9. Barriers: Physical/ Cognitive Constraints • Physical/ cognitive limitations associated with decline • Static • Dynamic • Progressive conditions  changing user profile

  10. Barriers: Stakeholder Interactions • Interaction between core carers and wider support network important • Deliver 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

  11. Barriers: Privacy concerns • One size does not fit all • Need to tailor information provision to different stakeholders • Older people anxious about threat to privacy via Internet • Doctors worry about: • Confidentiality • Physician-patient relationship

  12. Barriers: Organisational culture • ICT use by staff @ EoL care facilities • Admin tool • Technical support provided • ICT use by patients/ residents • Not part of their care • Technical support absent • Perceived risk to moral wellbeing • May be blocked by firewall

  13. Reducing barriers • Quick wins • Easier 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”

  14. Research directions • 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.

  15. 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.

  16. Summary • Those at EoL face unwanted social exclusion • Digital participation may reduce exclusion • Barriers exist • Especially in EoL care facilities • We aim to initiate research into how digital participation can: • Support social life of those near EoL • Alleviate social isolation The authors acknowledge the financial support of the EPSRC, grant no. EP/I026304/1.

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