Hidden Work and the Challenges of Scalability and Sustainability in Ambulatory Assisted Living

Abstract

Assisted living technologies may help people live independently while also-potentially-reducing health and care costs. But they are notoriously difficult to implement at scale and many devices are abandoned following initial adoption. We report findings from a study of global positioning system (GPS) tracking devices intended to support the independent living of people with cognitive impairment. Our aims were threefold: to understand (through ethnography) such individuals' lived experience of GPS tracking; to facilitate (through action research) the customization and adaptation of technologies and care services to provide effective, ongoing support; and to explore the possibilities for a co-production methodology that would enable people with cognitive impairment and their families to work with professionals and technical designers to shape these devices and services to meet their particular needs in a sustainable way. We found that the articulation work needed for maintaining the GPS technology in "working order" was extensive and ongoing. This articulation work does not merely supplement formal procedures, a lot of it is needed to get round them, but it is also often invisible and thus its importance goes largely unrecognized. If GPS technologies are to be implemented at scale and sustainably, methods must be found to capitalize on the skills and tacit knowledge held within the care network (professional and lay) to resolve problems, improve device design, devise new service solutions, and foster organizational learning. This article is the latest in a series we have published drawing on a number of studies of assisted living technologies and services. It reports work on a new set of case studies and does not contain material that has been published previously. The project was funded by the NIHR under its Programme Development Grant programme (RP-DG-1213-10003 INTRODUCTIONAssisted living solutions, which include telecare (remote delivery of support services via devices such as alarms or fall detectors to enable vulnerable people to live independently at home) and telehealth (remote clinical monitoring, consultation, and treatment of people in their homes), are increasingly seen by health and social care policy makers as a solution to the inter-related trends of an ageing population; rising rates of chronic illness and disability; cutbacks in health system capacity and budgets; and shifting social roles and expectations. However, while such policy interventions may be well-motivated, in practice there is a substantial gap between the vision and the realities of assisted living technologies and services adoption . Recent UK studies suggest that potential users-i.e., dementia sufferers (clients) and their carers of assisted living technologies are often reluctant to adopt them and/or abandon or disable them after their initial experiences (Sanders et al. 2012;Clark et al. 2011;Bentley et al. 2014;Cook et al. 2016). Such outcomes must cast doubt on whether the policy ambitions of delivering assisted living solut...

Towards successful digital transformation through co-creation: a longitudinal study of a four-year implementation of digital monitoring technology in residential care for persons with dementia

“…Organisational learning also included recognition of all the efforts and smaller tasks constantly performed without prior mentioning in written routines. This “hidden work” [73], relied on an expert level of competence because they required a trained eye and overview to be recognised and dealt with.…”

Supporting Healthy Aging through the Scale-Up, Spread, and Sustainability of Assistive Technology Implementation: A Rapid Realist Review of Participatory Co-Design for Assistive Technology with Older Adults

“…The first aspect revolves around a mechanism we identify as mutual awareness. This mechanism operates by taking advantage of an ongoing, iterative, participatory/collaborative process of knowledge sharing (Context + or −) to integrate a variety of lived experiential perspectives, such that previously isolated perspectival orientations, for example, that of older adult users, informal carers, service professionals, AT designers, other academics, policy/decision-makers, are now articulated and become shared understandings (Procter et al, 2018). Thus we have: This means that persons working and living from within each of the knowledge-to-action orientations, can come to use this newfound mutual awareness to more successfully orient future activities and contributions as the knowledge of what others perceive, understand, and do, becomes the context(s) for their own future action orientations (Greenhalgh, Jackson, et al, 2016;.…”

Negotiating Relation Work with Telehealth Home Care Companionship Technologies that Support Aging in Place

“…Like paid caregivers, informal (e.g. family) caregivers also perform work for aging in place to "work" [46,47]. For example, family caregivers may need to regularly configure and prepare health care technologies for care recipients [2].…”

“…Though these advances are touted as reducing work, CSCW research demonstrates that there is actually significant amount of effort needed to make home care technologies "work" [2]. Informal caregivers -unpaid people who provide support to older adults such as children, spouses, and friends -"co-produce" care with formal caregivers and provide (often unrecognized) labor to make home care technologies function [46,47]. Though low-paid and described as unskilled, home care aides perform many kinds of work, from relation work to information work [1].…”