Exploring Experiences of Self-Directed Care Budgets: Design Implications for Socio-Technical Interventions (original) (raw)
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Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems
Supporting disabled populations and their unpaid carers through designing sustainable healthcare interventions and infrastructures, is an important, yet challenging, area in HCI research. We report on a collaboration with 23 disabled citizens, unpaid carers, and a care organisation, wishing to co-develop digital responses to challenges they face in the management of self-directed care budgets. We describe how leveraging participatory methods, including asynchronous and remote engagements, enabled the co-creation of a sustainable digital common-pool resource, used by over 5,000 people worldwide. This study contributes novel confgurations of methods and tools for co-design with 'seldom heard' populations. Demonstrating how these enabled the collective articulation of what constitutes trust, governance, and responsibility, in the design of a digital commons, "MyCareBudget", ofering peer-produced care documents for use by disabled citizens and their unpaid carers. We discuss implications for HCI interested in co-designing sustainable socio-technical interventions with underserved and marginalised populations, in healthcare settings. CCS CONCEPTS • Human-centered computing → Human computer interaction (HCI); User studies; HCI design and evaluation methods; Empirical studies in HCI .
Technology in health and social care: a critical reflection from across two continents
2017
An ageing population, with pressure on health care and social care capacity, is driving demand for innovative solutions to support independence at home. Digital technologies have been proposed as a way to respond to these challenges, and as a consequence, the delivery of care is being transformed. However, in spite of technology being positioned as a panacea to meet the current challenges facing health and social care, a lack of critical discourse around technology use in this context is of concern. Issues regarding user acceptance, role of care technology and setting realistic expectations on what technology can contribute to these challenges have yet to be addressed.
2020
This article is a contribution to the reflection upon what forms of assistive technologies societies should provide to users of home-based services. The material is collected from five focus group interviews conducted in Oslo in 2016 as part of a research project into assistive technologies with the purpose to gain knowledge of how such technologies were used in the home-based services. The interviews are analyzed on the basis of Martha Nussbaum’s capability approach in order to see what forms of technologies influenced the users’ capabilities. Thereafter, the technologies are classified as either public or private technologies in order to see what forms of capabilities the public care for and which technologies that are in the domain of private initiative. Based on the focus groups, it seems that public technologies are targeted at bodily health and integrity, while private technologies on communication and infrastructure, with some notable exceptions. The paper ends with discussio...
Care at a Distance : On the Closeness of Technology
2012
Care and welfare are changing rapidly in contemporary welfare states. The Care & Welfare series publishes studies on changing relationships between citizens and professionals, on care and welfare governance, on identity politics in the context of these welfare state transformations, and on ethical topics. It will inspire international academic and political debate by developing and reflecting upon theories of (health) care and welfare through detailed national case studies and/or international comparisons. This series will offer new insights into the interdisciplinary theory of care and welfare and its practices. (eds.): Policy, People, and the New Professional. De-professionalisation and Re-professionalisation in Care and Welfare, 2006 Cover design: Sabine Mannel, NEON graphic design company, Amsterdam Lay-out: JAPES, Amsterdam ISBN 978 90 8964 397 1 e-ISBN 978 90 4851 301 7 (pdf) e-ISBN 978 90 4851 629 2 (ePub) NUR 882
Human Aspects of IT for the Aged Population. Aging, Design and User Experience, 2017
Bringing real users into the design process is often seen as a successful way of creating useful IT systems. However, when it comes to designing for elderly, this is not always possible since many elderly suffer from age-related decline, both with respect to physical and cognitive abilities. This paper elaborates on the approach of working with proxies, in this case elderly care personnel. Different groups of people (N = 117) working with elderly and well familiar with needs and contexts around elderly were engaged in this study. Using a questionnaire and a more in-depth workshop we explored with municipality care professionals their experiences as well as the need to create a framework to improve such a proxy approach, and whether a method using care professionals as mediators could be possible to establish in elderly care. The results described in this paper are complementary to ours and others previous knowledge and show promising commitment and willingness to work in accordance with the proposed method.
A trajectory for technology-supported elderly care work
Computer Supported Cooperative Work (CSCW)
To enable elderly people to live independently in their homes, the government aims to de-institutionalize elderly care services by upscaling home care services and care housing and downscaling long-term stays at nursing homes. Increasing use of assistive technologies will play a significant role in the ongoing transformation of care services, however our empirical data shows how difficult appropriation and use of technology are for elderly endusers. In this paper, we suggest a comprehensive elderly care trajectory model that includes the collaborative work of self-care, formal care, informal care and technology. We build our trajectory on empirical studies of elderly people using assistive technology in a care housing and in nursing homes, in addition to Corbin and Strauss' classic work. Our proposal of an elderly care trajectory fits with the municipal care staircase, but challenges its minimalist service level focus, as well as its late and limited introduction of technology.
International Journal of Cultural Studies
There is a growing interest in using social media and digital platforms as allies to strengthen social support among the aged. Drawing on ethnographic interviews and observations of 21 people in their 80s, the article foregrounds the multiple and intersecting temporalities of informal mediated care practices in later life through an exploration of the wide range of infrastructures on which they rely, from social media platforms to housing and urban infrastructure. We identify four temporalities of mediated informal care to assert the need to problematize the future-oriented temporalities of new caring media. The article paves the way to consider infrastructures of informal care as making time in multiple forms, irrespective of their newness or oldness, or the futures that every new piece of technology and service may potentially bring to our present.
Journal of Multidisciplinary Healthcare
Purpose: Assistive technologies and digitalization of services are promoted through health policy as key means to manage community care obligations efficiently, and to enable older community care recipients with mild cognitive impairment (MCI) and dementia (D) to remain at home for longer. The overall aim of this paper is to explore how community health care workers enacted current policy on technology with home-dwelling citizens with MCI/D. Participants and Methods: Twenty-four community health care workers participated in one of five focus group discussions that explored their experiences and current practices with technologies for citizens with MCI/D. Five researchers took part in the focus groups, while six researchers collaboratively conducted an inductive, thematic analysis according to Braun & Clarke. Results: Two main themes with sub-themes were identified: 1) Current and future potentials of technology; i) frequently used technology, ii) cost-effectiveness and iii) "be there" for social contact and 2) Barriers to implement technologies; i) unsystematic approaches and contested responsibility, ii) knowledge and training and iii) technology in relation to userfriendliness and citizen capacities. Conclusion: This study revealed the complexity of implementing policy aims regarding technology provision for citizens with MCI/D. By use of Lipsky's theory on street-level bureaucracy, we shed light on how community health care workers were situated between policies and the everyday lives of citizens with MCI/D, and how their perceived lack of knowledge and practical experiences influenced their exercise of professional discretion in enacting policy on technology in community health care services. Overall, addressing systematic technology approaches was not part of routine care, which may contribute to inequities in provision of technologies to enhance occupational possibilities and meaningful activities in everyday lives of citizens with MCI/D. Trial registration: NSD project number 47996.
Health Information Technology and Caregiver Interaction: Building Healthy Ecosystems
Exploring Service Science, 2018
This qualitative study explores the widely recognized role of the informal caregivers (ICGs) as key co-producers in the delivery of effective and sustainable healthcare systems. The central argument is that to enhance the quality of care in non-clinical settings and the healthcare ecosystem as a whole, developers of Health Information Technology (HIT) need to harness the knowledge and experiences of the ICGs to better align their products to practice. The paper has two aims: to improve the understandability of informal caregivers' role in non-traditional healthcare settings, and to identify and formulate valuable guidelines for the development of "fit for use" HIT solutions that acknowledge the needs of the ICGs.
Ageing and Society, 2018
Assistive technologies (ATs) are being ‘mainstreamed’ within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by ‘bricolage’ or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in ...