Digital Participation at the End of Life Rachid Hourizi Department of Computer Science, University of Bath, Bath, UK. +44 (0)1225 385935 r.hourizi@bath.ac.uk Wendy Moncur School of Computing, University of Dundee, Dundee, UK. +44 (0)1382 386538 wmoncur@dundee.ac.uk Tony Walter Centre for Death & Society, University of Bath, Bath, UK. +44 (0)1225 383595 J.A.Walter@bath.ac.uk ABSTRACT In this paper, we describe the barriers to digital participation experienced by those at the end of life, propose a framework in which to set these barriers, and discuss research directions in addressing them. Categories and Subject Descriptors H5.m. Information interfaces and presentation (e.g., HCI): Miscellaneous. General Terms Design, Human Factors. Keywords Digital inclusion, social networks, older adults, end of life, thanatosensitive design. 1. Introduction Most of us will die in old age, after a prolonged physical and possibly also social decline, beset by multiple conditions. It is predicted that, by 2030, older adults (people over the age of 65) will account for 86 per cent of deaths. Those over 85 will account for 44 per cent of deaths [7]. While the concept of “dying well” is subjective, there is wide agreement that dying well in part depends on social support by family, friends and carers [5, 6]. Yet as people move towards the end of life (EoL), they are likely to become increasingly socially isolated [12]. This is exacerbated by the over-70s being less likely than any other age group to use digital social networking tools [13]. For many, this absence of use may be a simple matter of preference. Nevertheless, for both those living at home and for those in EoL care institutions (hospitals, care homes, hospices) a complex set of barriers limits their access to friends, family, carers and support organizations, who might more easily be reached online. In this paper, we describe those barriers, highlight technology use that currently circumvents the barriers, and introduce ongoing work that seeks to mitigate them further. 2. Digital Participation At EoL, digital participation may reduce isolation for some individuals – e.g. the dying, the bereaved and their respective support networks. Previous studies show that people in these groups have used Web 2.0 resources such as blogs [1], online support groups and social networking sites to connect with others, to describe their experiences and to seek support [4][9]. This is, however, far from the norm for older adults. Most individuals at EoL do not participate digitally, and their social death will either precede or be synchronous with physical death. 2.1 Barriers to Digital Participation A complex set of barriers can prevent those at EoL – particularly older adults - from digital participation, either as originators or recipients of information, communication and social contact. These barriers include: a lack of hardware (e.g. access to a PC or smart phone) and software (e.g. email), access (e.g. absence of broadband in remote communities), technology literacy and confidence, and absence of mentoring [2]. Further barriers may stem from physical or cognitive limitations or decline – e.g. a user’s ability to use a keyboard may dwindle as their physical condition declines. Beyond these more obvious barriers, there are subtle barriers which arise from stakeholder interactions at EoL, and from the organisational culture of EoL care providers. It is on these that we focus here. 2.1.1 Stakeholder interaction Communication between the individuals and groups (stakeholders) involved in EoL care is often poorly supported. These stakeholders include the individual at EoL, their core carers (a small group of family/ close friends), and the wider support network of family, friends, neighbors, colleagues, health and social care practitioners, spiritual advisors and Third Sector organizations. A recent study of an Australian ‘Home Hospice’ program highlights both the importance of interaction between the core carers and the wider support network, and the difficulty of sharing information across the network [5]. Our own preliminary conversations with highly regarded hospices and care homes suggest that they recognize (and in many cases wish to change) the barriers to EoL care caused when online and offline information is scattered amongst stakeholders, but not shared effectively. Information sharing is further complicated by privacy concerns entailed in life-threatening illness. Previous research has highlighted individual families’ desire that different information be given to different stakeholders, and also older people’s fears that the Internet threatens privacy. Palliative care doctors have also expressed concerns about privacy – e.g. “Blogging presents an important medium of communication with the outside world for patients who are bed bound and socially isolated, but raises important clinical, ethical and social issues relating to confidentiality and the nature of the physician-patient relationship…” [8]. Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. DE 2011, November 16-17, 2011, Newcastle, UK. Copyright 2011 ACM 1-58113-000-0/00/0010…$10.00.