Supporting Informal Carers' Independency Through Coordinated Care

Dependency research in informal care has a long history. Studies within this area usually focus on the dependencies that care receivers have in relation to those providing the care: the informal carers. They usually take for granted the dependencies that informal care brings upon the carers. This paper draws attention to these important (unpaid) workers of our current society and discusses how engaging in caring can constrain one of their most valued personal attribute: their independency. Not only that, the paper discusses how coordinated care can come to the rescue of some of this independency, introducing a few simple but yet effective ICT solutions that can create opportunities for it. The findings presented in this paper come from rich ethnographic data collected within TOPIC, a European AAL joint project conducted across Austria, France and Germany. Finally, we show our research framework in the setting of informal care with the complexity and dimensions in human and non-human supported caring activities.

[1]  Michael Fine,et al.  Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’ , 2005, Ageing and Society.

[2]  Werner Brouwer,et al.  Economic valuation of informal care: the contingent valuation method applied to informal caregiving. , 2005, Health economics.

[3]  Jakob E. Bardram,et al.  Temporal Coordination –On Time and Coordination of CollaborativeActivities at a Surgical Department , 2000, Computer Supported Cooperative Work (CSCW).

[4]  Mark Hawley,et al.  User requirements for an ICT‐based system to provide care, support and information access for older people in the community , 2012 .

[5]  Sri Hastuti Kurniawan,et al.  Review of Interaction design , 2003 .

[6]  Eva Feder Kittay,et al.  Dependency, Difference and the Global Ethic of Longterm Care , 2005 .

[7]  Claus Bossen,et al.  CareCoor: Augmenting the coordination of cooperative home care work , 2013, Int. J. Medical Informatics.

[8]  R. Schulz,et al.  Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. , 1999, JAMA.

[9]  Morten Nielsen,et al.  Characterizing modes of coordination: a comparison between oral and artifact based coordination , 2001, GROUP.

[10]  D Wilkin,et al.  Conceptual problems in dependency research. , 1987, Social science & medicine.

[11]  William Gibson,et al.  Working with Qualitative Data , 2009, QMiP Bulletin.

[12]  Erik Grönvall,et al.  Challenges and Opportunities for Collaborative Technologies for Home Care Work , 2011, ECSCW.

[13]  C Levine,et al.  The economic value of informal caregiving. , 1999, Health affairs.

[14]  Leysia Palen,et al.  Social, individual and technological issues for groupware calendar systems , 1999, CHI '99.

[15]  Steffen Torp,et al.  Experiences with using information and communication technology to build a multi-municipal support network for informal carers , 2013, Informatics for health & social care.

[16]  Nancy Fraser,et al.  A Genealogy of Dependency: Tracing a Keyword of the U.S. Welfare State , 1994, Signs: Journal of Women in Culture and Society.

[17]  Anoop Gupta,et al.  Using Web annotations for asynchronous collaboration around documents , 2000, CSCW '00.

[18]  C. Saraceno,et al.  Social inequalities in facing old-age dependency: a bi-generational perspective , 2010 .

[19]  Aparecido Fabiano Pinatti de Carvalho,et al.  The Definition and Use of Personas in the Design of Technologies for Informal Caregivers , 2015, HCI.

[20]  Hilda Tellioglu,et al.  Coordination of work: towards a typology , 2010, CompSysTech '10.

[21]  Jill Manthorpe,et al.  Caring at a distance: Learning and practice issues , 2001 .

[22]  D. Dooley.  Social Research Methods , 1990 .

[23]  Marc A Koopmanschap,et al.  Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. , 2004, Arthritis and rheumatism.

[24]  D Emery,et al.  Information and communication systems for the assistance of carers based on ACTION. , 1999, Medical informatics and the Internet in medicine.

[25]  Henk Nies,et al.  Nine European trends in quality managent of long-term care for older people , 2012 .