ATHENE : Assistive technologies for healthy living in elders : needs assessment by ethnography

Numerous assistive technologies to support independent living –including personal alarms, mobile phones, self-monitoring devices, mobility aids, software apps and home adaptations –have been developed over the years, but their uptake by older people, especially those from minority ethnic groups, is poor. This paper outlines the ways in which the ATHENE project seeks to redress this situation by producing a richer understanding of the complex and diverse living experiences and care needs of older people and exploring how industry, the NHS, social services and third sector can work with the older people themselves to ‘co-produce’ useful and useable ALT designs to meet their needs. In this paper, we provide an overview of the project methodology and discuss some of the issues it raises for the design and development process

Hidden work and the challenges of scalability and sustainability in ambulatory assisted living

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

Exploring the requirements for technology to support people with dementia in the home

This thesis explores the requirements of technology to support people with dementia in the home. More specifically, it aims to establish design requirements for systems that prompt people with mild to moderate dementia through multi-step tasks. Chapter 1 presents existing literature that is relevant to the development of cognitive prostheses for people with dementia. The review describes patterns of cognitive decline in dementia, the impact of these deficits on everyday tasks, and technological and non-technological methods of support. Chapter 2 presents the problems of dementia in the home from a professional carer perspective. Nine interviews and one focus group were conducted with 22 occupational therapists and professional carers. The transcripts were analysed using Grounded Theory Analysis (GTA), in accordance with Strauss and Corbin (1990). The analysis revealed three main themes: 'Problems in the home' (daily activities, risks, and interpersonal interaction), 'underlying deficits' (sequencing, memory/orientations, and learning), and 'consequences' for the person with dementia (physical wellbeing and control) and the informal caregiver (relationship and care demands). The implications of these themes for the design of assistive technology are discussed. Chapter 3 presents the problems of dementia from a patient-caregiver perspective. Eight home visits and two individual interviews were conducted with people with mild to moderate dementia and informal caregivers. GT A revealed four main themes: 'Problems in the home' (daily activities, domestic tasks, leisure, and interpersonal interaction), 'underlying deficits' (sequencing and memory/orientation), 'consequences' for the person with dementia (Physical wellbeing and control), and the informal caregiver (relationship and care demands), and 'situated factors' (verbal cues, visual cues, and familiarity). The perspective is compared to the professional carer perspective, and the design implications are discussed. Chapter 4 describes the types of problems people with dementia experience when performing kitchen tasks. Six people with mild to moderate dementia were video recorded performing activities in their own kitchen. These included making a cup of tea/coffee, a bowl of soup, beans on toast, and tea/coffee with toast. Twenty-two video recordings were transcribed and analysed. Errors that prevented task accomplishment were recorded and grouped to form error classifications. Eight error types were identified with four main themes: 'Sequencing' (intrusion, omission, and repetition), 'orientation' (locating and identifying), 'operation' of appliances, and 'incoherence' (toying and inactivity). The error types are discussed in relation to cognitive theory and the implications for designing prompting systems. Chapter 5 describes an experiment embedded in a real activity, designed to evaluate the effect of a novel cueing method. Eight participants with moderate dementia carried out real cooking activities (making porridge with syrup and chocolate comflake cakes) with a care worker. At certain points, the participants were required to tum on/off the cooker. Correct control selection was scored under three different cueing conditions that represented the association between hotplates and controls. Condition 1 used the original design (symbols), condition 2 used verbal (written) cues, and condition 3 used a lighting effect (hotplate and corresponding control would light up). The implications of the experiment for the design and evaluation of technological prompts are discussed. Chapter 6 describes future steps that should be taken to develop prompting systems for people with dementia. This includes a review of recent developments in pervasive computing that match the design requirements for prompting systems, and an interactive design framework that should be used to guide the design of prompting systems for domestic settings. Chapter 7 provides a summary of the thesis. This includes an overview of requirements for technology to support people with dementia at home. The methodological contributions of the thesis are also discussed

Desperately seeking intersectionality in digital health disparity research: narrative review to inform a richer theorization of multiple disadvantage.

Background: Digital consultations between patients and clinicians increased markedly during the COVID-19 pandemic, raising questions about equity. Objective: This study aimed to review the literature on how multiple disadvantage—specifically, older age, lower socioeconomic status, and limited English proficiency—has been conceptualized, theorized, and studied empirically in relation to digital consultations. We focused mainly on video consultations as they have wider disparities than telephone consultations and relevant data on e-consultations are sparse. Methods: Using keyword and snowball searching, we identified relevant papers published between 2012 and 2022 using Ovid MEDLINE, Web of Science, Google Scholar, and PubMed. The first search was completed in July 2022. Papers meeting the inclusion criteria were analyzed thematically and summarized, and their key findings were tabulated using the Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative Research criteria. Explanations for digital disparities were critically examined, and a search was undertaken in October 2022 to identify theoretical lenses on multiple disadvantage. Results: Of 663 articles from the initial search, 27 (4.1%) met our inclusion criteria. In total, 37% (10/27) were commentaries, and 63% (17/27) were peer-reviewed empirical studies (11/27, 41% quantitative; 5/27, 19% qualitative; 1/27, 4% mixed methods; 1/27, 4% systematic reviews; and 1/27, 4% narrative reviews). Empirical studies were mostly small, rapidly conducted, and briefly reported. Most studies (25/27, 93%) identified marked digital disparities but lacked a strong theoretical lens. Proposed solutions focused on identifying and removing barriers, but the authors generally overlooked the pervasive impact of multiple layers of disadvantage. The data set included no theoretically informed studies that examined how different dimensions of disadvantage combined to affect digital health disparities. In our subsequent search, we identified 3 theoretical approaches that might help account for these digital disparities. Fundamental cause theory by Link and Phelan addresses why the association between socioeconomic status and health is pervasive and persists over time. Digital capital theory by Ragnedda and Ruiu explains how people mobilize resources to participate in digitally mediated activities and services. Intersectionality theory by Crenshaw states that systems of oppression are inherently bound together, creating singular social experiences for people who bear the force of multiple adverse social structures. Conclusions: A limitation of our initial sample was the sparse and undertheorized nature of the primary literature. The lack of attention to how digital health disparities emerge and play out both within and across categories of disadvantage means that solutions proposed to date may be oversimplistic and insufficient. Theories of multiple disadvantage have bearing on digital health, and there may be others of relevance besides those discussed in this paper. We call for greater interdisciplinary dialogue between theoretical research on multiple disadvantage and empirical studies on digital health disparities

What matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare

Telehealth and telecare research has been dominated by efficacy trials. The field lacks a sophisticated theorisation of [a] what matters to older people with assisted living needs; [b] how illness affects people's capacity to use technologies; and [c] the materiality of assistive technologies. We sought to develop a phenomenologically and socio-materially informed theoretical model of assistive technology use. Forty people aged 60–98 (recruited via NHS, social care and third sector) were visited at home several times in 2011–13. Using ethnographic methods, we built a detailed picture of participants' lives, illness experiences and use (or non-use) of technologies. Data were analysed phenomenologically, drawing on the work of Heidegger, and contextualised using a structuration approach with reference to Bourdieu's notions of habitus and field. We found that participants' needs were diverse and unique. Each had multiple, mutually reinforcing impairments (e.g. tremor and visual loss and stiff hands) that were steadily worsening, culturally framed and bound up with the prospect of decline and death. They managed these conditions subjectively and experientially, appropriating or adapting technologies so as to enhance their capacity to sense and act on their world. Installed assistive technologies met few participants' needs; some devices had been abandoned and a few deliberately disabled. Successful technology arrangements were often characterised by ‘bricolage’ (pragmatic customisation, combining new with legacy devices) by the participant or someone who knew and cared about them. With few exceptions, the current generation of so-called ‘assisted living technologies’ does not assist people to live with illness. To overcome this irony, technology providers need to move beyond the goal of representing technology users informationally (e.g. as biometric data) to providing flexible components from which individuals and their carers can ‘think with things’ to improve the situated, lived experience of multi-morbidity. A radical revision of assistive technology design policy may be needed

Co-production in practice : how people with assisted living needs can help design and evolve technologies and services

Background The low uptake of telecare and telehealth services by older people may be explained by the limited involvement of users in the design. If the ambition of ‘care closer to home’ is to be realised, then industry, health and social care providers must evolve ways to work with older people to co-produce useful and useable solutions. Method We conducted 10 co-design workshops with users of telehealth and telecare, their carers, service providers and technology suppliers. Using vignettes developed from in-depth ethnographic case studies, we explored participants’ perspectives on the design features of technologies and services to enable and facilitate the co-production of new care solutions. Workshop discussions were audio recorded, transcribed and analysed thematically. Results Analysis revealed four main themes. First, there is a need to raise awareness and provide information to potential users of assisted living technologies (ALTs). Second, technologies must be highly customisable and adaptable to accommodate the multiple and changing needs of different users. Third, the service must align closely with the individual’s wider social support network. Finally, the service must support a high degree of information sharing and coordination. Conclusions The case vignettes within inclusive and democratic co-design workshops provided a powerful means for ALT users and their carers to contribute, along with other stakeholders, to technology and service design. The workshops identified a need to focus attention on supporting the social processes that facilitate the collective efforts of formal and informal care networks in ALT delivery and use

The ATHENE project:the importance of bricolage in personalising assisted living technologies

Introduction: An aging population is fueling interest in assisted living technologies (ALTs) to support independence at home. Numerous ALTs have been developed and deployed, but uptake and use has fallen short of levels predicted by policymakers. A key reason is a lack of understanding of users’ needs. In this paper we report findings from the ATHENE (Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography) project, which is funded by the Technology Strategy Board under its Assisted Living Innovation Platform programme. The project aims to produce a richer understanding of the lived experiences and needs of older people and explore how ALT stakeholders – suppliers, health and social care providers – can work with users and carers to ‘coproduce’ ALTs. We focus, in particular, on the role of ‘bricolage’ (pragmatic customisation, combining new with legacy devices) by informal carers, such as family members, in enabling ALTs to be personalised to individual needs. Bricolage allows users and family members to take the initiative in ‘coproducing’ ALTs. that making assisted living work relies on collaboration, involving not only formal carers, but also informal ones. We argue that a new research agenda is needed, focusing on solving challenges of involving users and their informal carers in the straightforward and dependable co-production of ALTs

Infrastructure revisited : an ethnographic case study of how health information infrastructure shapes and constrains technological innovation

Background: Star defined infrastructure as something other things “run on”; it consists mainly of “boring things.” Building on her classic 1999 paper, and acknowledging contemporary developments in technologies, services, and systems, we developed a new theorization of health information infrastructure with five defining characteristics: (1) a material scaffolding, backgrounded when working and foregrounded upon breakdown; (2) embedded, relational, and emergent; (3) collectively learned, known, and practiced (through technologically-supported cooperative work and organizational routines); (4) patchworked (incrementally built and fixed) and path-dependent (influenced by technical and socio-cultural legacies); and (5) institutionally supported and sustained (eg, embodying standards negotiated and overseen by regulatory and professional bodies). Objective: Our theoretical objective was, in a health care context, to explore what information infrastructure is and how it shapes, supports, and constrains technological innovation. Our empirical objective was to examine the challenges of implementing and scaling up video consultation services. Methods: In this naturalistic case study, we collected a total of 450 hours of ethnographic observations, over 100 interviews, and about 100 local and national documents over 54 months. Sensitized by the characteristics of infrastructure, we sought examples of infrastructural challenges that had slowed implementation and scale-up. We arranged data thematically to gain familiarity before undertaking an analysis informed by strong structuration, neo-institutional, and social practice theories, together with elements taken from the actor-network theory. Results: We documented scale-up challenges at three different sites in our original case study, all of which relate to “boring things”: the selection of a platform to support video-mediated consultations, the replacement of desktop computers with virtual desktop infrastructure profiles, and problems with call quality. In a fourth subcase, configuration issues with licensed video-conferencing software limited the spread of the innovation to another UK site. In all four subcases, several features of infrastructure were evident, including: (1) intricacy and lack of dependability of the installed base; (2) interdependencies of technologies, processes, and routines, such that a fix for one problem generated problems elsewhere in the system; (3) the inertia of established routines; (4) the constraining (and, occasionally, enabling) effect of legacy systems; and (5) delays and conflicts relating to clinical quality and safety standards. Conclusions: Innovators and change agents who wish to introduce new technologies in health services and systems should: (1) attend to materiality (eg, expect bugs and breakdowns, and prioritize basic dependability over advanced functionality); (2) take a systemic and relational view of technologies (versus as an isolated tool or function); (3) remember that technology-supported work is cooperative and embedded in organizational routines, which are further embedded in other routines; (4) innovate incrementally, taking account of technological and socio-cultural legacies; (5) consider standards but also where these standards come from and what priorities and interests they represent; and (6) seek to create leeway for these standards to be adapted to different local conditions