Background and Motivation

Technological developments for informal care are a very important and timely topic. Following up two successful editions of the CCCiC series (http://www.cccic.org), this chapter of the workshop elaborates on the discussions and outcomes of the two previous events, focusing on ethical issues of the development and the use of pervasive technologies in informal care.

Various research projects have been devised to address the design and development of technological aids for the elderly and their close relatives caring for them (their informal caregivers)t surprisingly, pervasive technologies have emerged as strong allies to the task of providing caregivers with informational, emotional and tangible support, which may help them cope with their inner burden (Plaza et al., 2011). Furthermore, the employment of user-centered (UCD) and participatory design (PD) approaches to understand informal caregivers’ needs and devise useful and usable solutions to them has been proved to be of special relevance (Breskovic et al., 2013).

In the first two workshops of this series, we have respectively focused on: (i) the elaboration of a roadmap for the design of ICTs providing social support for informal caregivers and (ii) the discussion of concepts and methodologies that would support and potentially shape the design and development of such ICTs based on work in TOPIC (The Online Platform for Informal Caregivers)  project, a European project under the AAL (Active and Assisted Living) Program (http://topic-aal.eu).

In this particular workshop we would like to turn our attention to ethical concerns surrounding the adoption and use of pervasive health technology. In fact, despite the benefits that pervasive technologies can provide, current and past research has raised several important ethical considerations about their use, as reported by Zwijsen et al (2011) and Niemeijer et al. (2010). Moreover, our experience shows that especially user-centered design approaches need to be confronted with ethics – e.g., when users ask for technologies that can in fact conflicts with ethical issues. In addition to that, we will address the ethical issues that may arise from the use of user-centered design approach for an important field: the elaboration of pervasive health technologies.

References

Plaza, I., Martín, L., Martin, S., and Medrano, C. 2011. Mobile applications in an aging society: Status and trends. Journal of Systems and Software. 84, 11, 1977-1988.

Breskovic, I., de Carvalho, A.F.P., Schinkinger, S., and Tellioğlu, H. 2013. Social Awareness Support for Meeting Informal Carers’ Needs: Early Development in TOPIC. In Adjunct Proceedings of the 13th European Conference on Computer Supported Cooperative Work (ECSCW 2013), Paphos, Cyprus. Department of Computer Science Aarhus University, Aarhus, Denmark, 3-8.

Zwijsen, S.A., Niemeijer, A.R., and Hertogh, C.M.P.M. 2011. Ethics of using assistive technology in the care for community-dwelling elderly people: An overview of the literature. Aging & Mental Health. 15, 4 (2015/07/09), 419-427.

Niemeijer, A.R., Frederiks, B.J.M., Riphagen, I.I., Legemaate, J., Eefsting, J.A., and Hertogh, C.M.P.M. 2010. Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: an overview of the literature. International Psychogeriatrics. 22, Special Issue 07, 1129-1142.