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

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

Theorising the shift to video consulting in the UK during the COVID-19 pandemic: Analysis of a mixed methods study using practice theory

We studied video consulting in the National Health Service during 2020-2021 through video interviews, an online survey and online discussions with people who had provided and participated in such consultations. Video consulting had previously been used for selected groups in limited settings in the UK. The pandemic created a seismic shift in the context for remote consulting, in which video transformed from a niche technology typically introduced by individual clinicians committed to innovation and quality improvement to offering what many felt was the only safe way to deliver certain types of healthcare. A new practice emerged: a co-constitution of technology and healthcare made possible by new configurations of equipment, connectivity and physical spaces. Despite heterogeneous service settings and previous experiences of video consulting, we found certain kinds of common changes had made video consulting possible. We used practice theory to analyse these changes, interpreting the commonalities found in our data as changes in purpose, material arrangements and a relaxing of rules about security, confidentiality and location of consultations. The practice of video consulting was equivocal. Accounts of, and preferences for, video consulting varied as did the extent to which it was sustained after initial take-up. People made sense of video consulting in different ways, ranging from interpreting video as offering a new modality of healthcare for the future to a sub-optimal, temporary alternative to in-person care. Despite these variations, video consulting became a recognisable social phenomenon, albeit neither universally adopted nor consistently sustained. The nature of this social change offers new perspectives on processes of implementation and spread and scale-up. Our findings have important implications for the future of video consulting. We emphasise the necessity for viable material arrangements and a continued shared interpretation of the meaning of video consulting for the practice to continue

Designing assisted living technologies 'in the wild' : preliminary experiences with cultural probe methodology

Background There is growing interest in assisted living technologies to support independence at home. Such technologies should ideally be designed ‘in the wild’ i.e. taking account of how real people live in real homes and communities. The ATHENE (Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography) project seeks to illuminate the living needs of older people and facilitate the co-production with older people of technologies and services. This paper describes the development of a cultural probe tool produced as part of the ATHENE project and how it was used to support home visit interviews with elders with a range of ethnic and social backgrounds, family circumstances, health conditions and assisted living needs. Method Thirty one people aged 60 to 98 were visited in their homes on three occasions. Following an initial interview, participants were given a set of cultural probe materials, including a digital camera and the ‘Home and Life Scrapbook’ to complete in their own time for one week. Activities within the Home and Life Scrapbook included maps (indicating their relationships to people, places and objects), lists (e.g. likes, dislikes, things they were concerned about, things they were comfortable with), wishes (things they wanted to change or improve), body outline (indicating symptoms or impairments), home plan (room layouts of their homes to indicate spaces and objects used) and a diary. After one week, the researcher and participant reviewed any digital photos taken and the content of the Home and Life Scrapbook as part of the home visit interview. Findings The cultural probe facilitated collection of visual, narrative and material data by older people, and appeared to generate high levels of engagement from some participants. However, others used the probe minimally or not at all for various reasons including limited literacy, physical problems (e.g. holding a pen), lack of time or energy, limited emotional or psychological resources, life events, and acute illness. Discussions between researchers and participants about the materials collected (and sometimes about what had prevented them completing the tasks) helped elicit further information relevant to assisted living technology design. The probe materials were particularly helpful when having conversations with non-English speaking participants through an interpreter. Conclusions Cultural probe methods can help build a rich picture of the lives and experiences of older people to facilitate the co-production of assisted living technologies. But their application may be constrained by the participant’s physical, mental and emotional capacity. They are most effective when used as a tool to facilitate communication and development of a deeper understanding of older people’s needs

Wandering as a sociomaterial practice : extending the theorization of GPS tracking in cognitive impairment

Electronic tracking through global positioning systems (GPSs) is used to monitor people with cognitive impairment who “wander” outside the home. This ethnographic study explored how GPS-monitored wandering was experienced by individuals, lay carers, and professional staff. Seven in-depth case studies revealed that wandering was often an enjoyable and worthwhile activity and helped deal with uncertainty and threats to identity. In what were typically very complex care contexts, GPS devices were useful to the extent that they aligned with a wider sociomaterial care network that included lay carers, call centers, and health and social care professionals. In this context, “safe” wandering was a collaborative accomplishment that depended on the technology’s materiality, affordances, and aesthetic properties; a distributed knowledge of the individual and the places they wandered through, and a collective and dynamic interpretation of risk. Implications for design and delivery of GPS devices and services for cognitive impairment are discussed

Remote care in UK general practice: baseline data on 11 case studies [version 2; peer review: 2 approved]

Background: Accessing and receiving care remotely (by telephone, video or online) became the default option during the coronavirus disease 2019 (COVID-19) pandemic, but in-person care has unique benefits in some circumstances. We are studying UK general practices as they try to balance remote and in-person care, with recurrent waves of COVID-19 and various post-pandemic backlogs. Methods: Mixed-methods (mostly qualitative) case study across 11 general practices. Researchers-in-residence have built relationships with practices and become familiar with their contexts and activities; they are following their progress for two years via staff and patient interviews, documents and ethnography, and supporting improvement efforts through co-design. In this paper, we report baseline data. Results: Reflecting our maximum-variety sampling strategy, the 11 practices vary in size, setting, ethos, staffing, population demographics and digital maturity, but share common contextual features—notably system-level stressors such as high workload and staff shortages, and UK’s technical and regulatory infrastructure. We have identified both commonalities and differences between practices in terms of how they: 1] manage the ‘digital front door’ (access and triage) and balance demand and capacity; 2] strive for high standards of quality and safety; 3] ensure digital inclusion and mitigate wider inequalities; 4] support and train their staff (clinical and non-clinical), students and trainees; 5] select, install, pilot and use technologies and the digital infrastructure which support them; and 6] involve patients in their improvement efforts. Conclusions: General practices’ responses to pandemic-induced disruptive innovation appear unique and situated.  We anticipate that by focusing on depth and detail, this longitudinal study will throw light on why a solution that works well in one practice does not work at all in another. As the study unfolds, we will explore how practices achieve timely diagnosis of urgent or serious illness and manage continuity of care, long-term conditions and complex needs

Protocol: Remote care as the ‘new normal’? Multi-site case study in UK general practice [version 1; peer review: 2 approved]

Background: Following a pandemic-driven shift to remote service provision, UK general practices offer telephone, video or online consultation options alongside face-to-face. This study explores practices’ varied experiences over time as they seek to establish remote forms of accessing and delivering care. Methods: This protocol is for a mixed-methods multi-site case study with co-design and national stakeholder engagement. 11 general practices were selected for diversity in geographical location, size, demographics, ethos, and digital maturity. Each practice has a researcher-in-residence whose role is to become familiar with its context and activity, follow it longitudinally for two years using interviews, public-domain documents and ethnography, and support improvement efforts. Research team members meet regularly to compare and contrast across cases. Practice staff are invited to join online learning events. Patient representatives work locally within their practice patient involvement groups as well as joining an online patient learning set or linking via a non-digital buddy system. NHS Research Ethics Approval has been granted. Governance includes a diverse independent advisory group with lay chair. We also have policy in-reach (national stakeholders sit on our advisory group) and outreach (research team members sit on national policy working groups). Results (anticipated): We expect to produce rich narratives of contingent change over time, addressing cross-cutting themes including access, triage and capacity; digital and wider inequities; quality and safety of care (e.g. continuity, long-term condition management, timely diagnosis, complex needs); workforce and staff wellbeing (including non-clinical staff, students and trainees); technologies and digital infrastructure; patient perspectives; and sustainability (e.g. carbon footprint). Conclusion: By using case study methods focusing on depth and detail, we hope to explain why digital solutions that work well in one practice do not work at all in another. We plan to inform policy and service development through inter-sectoral network-building, stakeholder workshops and topic-focused policy briefings

Beyond adoption: A new framework for theorising and evaluating Non-adoption, Abandonment and challenges to Scale-up, Spread and Sustainability (NASSS) of health and care technologies

© 2017 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.Background: Many promising technological innovations in health and social care are characterized by nonadoption or abandonment by individuals or by failed attempts to scale up locally, spread distantly, or sustain the innovation long term at the organization or system level. Objective: Our objective was to produce an evidence-based, theory-informed, and pragmatic framework to help predict and evaluate the success of a technology-supported health or social care program. Methods: The study had 2 parallel components: (1) secondary research (hermeneutic systematic review) to identify key domains, and (2) empirical case studies of technology implementation to explore, test, and refine these domains. We studied 6 technology-supported programs—video outpatient consultations, global positioning system tracking for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organizing software, and integrated case management via data sharing—using longitudinal ethnography and action research for up to 3 years across more than 20 organizations. Data were collected at micro level (individual technology users), meso level (organizational processes and systems), and macro level (national policy and wider context). Analysis and synthesis was aided by sociotechnically informed theories of individual, organizational, and system change. The draft framework was shared with colleagues who were introducing or evaluating other technology-supported health or care programs and refined in response to feedback. Results: The literature review identified 28 previous technology implementation frameworks, of which 14 had taken a dynamic systems approach (including 2 integrative reviews of previous work). Our empirical dataset consisted of over 400 hours of ethnographic observation, 165 semistructured interviews, and 200 documents. The final nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework included questions in 7 domains: the condition or illness, the technology, the value proposition, the adopter system (comprising professional staff, patient, and lay caregivers), the organization(s), the wider (institutional and societal) context, and the interaction and mutual adaptation between all these domains over time. Our empirical case studies raised a variety of challenges across all 7 domains, each classified as simple (straightforward, predictable, few components), complicated (multiple interacting components or issues), or complex (dynamic, unpredictable, not easily disaggregated into constituent components). Programs characterized by complicatedness proved difficult but not impossible to implement. Those characterized by complexity in multiple NASSS domains rarely, if ever, became mainstreamed. The framework showed promise when applied (both prospectively and retrospectively) to other programs.Peer reviewe

Linking the lonely: an exploration of a communication technology designed to support social interaction among older adults

This article explores mixed methods data gathered from a pilot of a communication system prototype in the homes of 19 older adults over a period of 10 weeks. The system has been designed to enhance communication among both friends and strangers and has been developed as a possible tool to increase interaction in older adults suffering from social isolation and loneliness. The paper uses remote logging data to inform discussion of how such a technology was received and utilised over time in a home setting. Qualitative data gathered via entry and exit interviews, and weekly checkpoint calls were used to provide deeper insight into patterns and practices identified via the logs