What is quality in assisted living technology? The ARCHIE framework for effective telehealth and telecare services.

BACKGROUND: We sought to define quality in telehealth and telecare with the aim of improving the proportion of patients who receive appropriate, acceptable and workable technologies and services to support them living with illness or disability. METHODS: This was a three-phase study: (1) interviews with seven technology suppliers and 14 service providers, (2) ethnographic case studies of 40 people, 60 to 98 years old, with multi-morbidity and assisted living needs and (3) 10 co-design workshops. In phase 1, we explored barriers to uptake of telehealth and telecare. In phase 2, we used ethnographic methods to build a detailed picture of participants' lives, illness experiences and technology use. In phase 3, we brought users and their carers together with suppliers and providers to derive quality principles for assistive technology products and services. RESULTS: Interviews identified practical, material and organisational barriers to smooth introduction and continued support of assistive technologies. The experience of multi-morbidity was characterised by multiple, mutually reinforcing and inexorably worsening impairments, producing diverse and unique care challenges. Participants and their carers managed these pragmatically, obtaining technologies and adapting the home. Installed technologies were rarely fit for purpose. Support services for technologies made high (and sometimes oppressive) demands on users. Six principles emerged from the workshops. Quality telehealth or telecare is 1) ANCHORED in a shared understanding of what matters to the user; 2) REALISTIC about the natural history of illness; 3) CO-CREATIVE, evolving and adapting solutions with users; 4) HUMAN, supported through interpersonal relationships and social networks; 5) INTEGRATED, through attention to mutual awareness and knowledge sharing; 6) EVALUATED to drive system learning. CONCLUSIONS: Technological advances are important, but must be underpinned by industry and service providers following a user-centred approach to design and delivery. For the ARCHIE principles to be realised, the sector requires: (1) a shift in focus from product ('assistive technologies') to performance ('supporting technologies-in-use'); (2) a shift in the commissioning model from standardised to personalised home care contracts; and (3) a shift in the design model from 'walled garden', branded products to inter-operable components that can be combined and used flexibly across devices and platforms. Please see related article: http://dx.doi.org/10.1186/s12916-015-0305-8.

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.

Experiences of Using Pathways and Resources for Participation and Engagement (PREP) Intervention for Children with Acquired Brain Injury: A Knowledge Translation Study.

Background: Children with acquired brain injury experience participation restrictions. Pathways and Resources for Participation and Engagement (PREP) is an innovative, participation focused intervention. Studies have examined PREP in Canadian research contexts, however little is known about implementation in real-life clinical settings. This study aimed to understand experiences of clinicians implementing PREP in a UK clinical context, with a focus on implementation processes and key factors for successful implementation. METHODS: A qualitative single-site 8-week knowledge translation intervention study, guided by an action research framework, explored clinicians' experiences of implementation. Six occupational therapists (OTs) working in a neurorehabilitation setting participated. The therapists provided two intervention sessions per week, over four weeks for one child on their caseload. Planning, implementation and evaluation were explored through two focus groups. Thematic analysis was used to analyse data. RESULTS: Two themes, "key ingredients before you start" and "PREP guides the journey", were identified before introducing PREP to practice. Four additional themes were related to PREP implementation: "shifting to a participation perspective", "participation moves beyond the OT", "environmental challengers and remedies" and "whole family readiness". A participation ripple effect was observed by building capacity across the multi-disciplinary team and families. The involvement of peers, social opportunities and acknowledging family readiness were key factors for successful implementation. CONCLUSIONS: The findings illustrate practical guidance to facilitate the uptake of participation-based evidence in clinical practice. Further research is required to understand aspects of knowledge translation when implementing participation interventions in other UK clinical settings.

The Handy Approach - Quick Integrated Person Centred Support Preparation.

Cost effective care requires comprehensive person-centred formulation of solutions. The East London NHS Foundation Trust Community Health Services in Newham have piloted models of Integrated Care called 'Virtual Wards' which aim to keep people living with multiple long-term conditions, well at home by minimising system complexity. These Virtual Wards comprise Interdisciplinary Teams (IDTs) with a General Practitioner (GP) seconded to provide leadership. Historically assessments have been dominated by biomedical approaches with disability emphasised over personal aspirations and ability. New professional skills are needed to organise information from diverse approaches into a common framework, which can enable agreed goals of care to be delivered collaboratively. From June 2014 to January 2016 we aimed to improve the documentation of person-centred goals of care in 100% of our assessments. Change ideas were tested and team development addressed to improve documentation of aspirations for care for people being referred and if achieved, then to test ideas to improve coproduction of care. Change ideas included Enhanced Clinical Supervision (ECS) by a GP with additional expert skills; Flash Teaching (FT) defined as five-minute weekly discussion on topics generated from the case-mix to develop a shared understanding of Integrated Care; Structured Formulation using a novel, quick, integrated assessment framework called the Handy Approach (HA) with the hand as a memory prompt to bring the personal together with the mental, social and physical domains and finally we tested focusing on 'Team Primacy' (mutual regard within the team) to embed behaviour change. 181 cases were tracked and documentation of personal aspirations for care by case showed: ECS 0/21 (0%); FT 5/50 (10%); ECS/FT plus the HA 35/83 (42%); Team Primacy plus ECS/FT/HA 27/27 (100%). By January 2016 prompted by using the Handy Approach in a highly functional team, all members of the IDT consistently documented personal aspirations.

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.

Technology as system innovation: a key informant interview study of the application of the diffusion of innovation model to telecare.

PURPOSE: To identify and explore factors that influence adoption, implementation and continued use of telecare technologies. METHOD: As part of the Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography (ATHENE) project, 16 semi-structured interviews were conducted with key participants from organisations involved in developing and providing telecare technologies and services. Data were analysed thematically, using a conceptual model of diffusion of innovations. RESULTS: Participants identified numerous interacting factors that facilitated or hindered adoption and use. As predicted by the model, these related variously to the technology, individual adopters, the process of social influence, the innovativeness and readiness of organisations, implementation and routinisation processes following initial adoption, and the nature and strength of linkages between these elements. Key issues included (i) the complexity and uniqueness of the "user system", (ii) the ongoing work needed to support telecare use beyond initial adoption, and (iii) the relatively weak links that typically exist between users of telecare technologies and the organisations who design and distribute them. CONCLUSIONS: Telecare is not merely a technology but a complex innovation requiring input from, and coordination between, people and organisations. To promote adoption and use, these contextual factors must be specified, understood and addressed.

The Day-to-Day Co-Production of Ageing in Place.

We report findings from a study that set out to explore the experience of older people living with assisted living technologies and care services. We find that successful 'ageing in place' is socially and collaboratively accomplished - 'co-produced' - day-to-day by the efforts of older people, and their formal and informal networks of carers (e.g. family, friends, neighbours). First, we reveal how 'bricolage' allows care recipients and family members to customise assisted living technologies to individual needs. We argue that making customisation easier through better design must be part of making assisted living technologies 'work'. Second, we draw attention to the importance of formal and informal carers establishing and maintaining mutual awareness of the older person's circumstances day-to-day so they can act in a concerted and coordinated way when problems arise. Unfortunately, neither the design of most current assisted living technologies, nor the ways care services are typically configured, acknowledges these realities of ageing in place. We conclude that rather than more 'advanced' technologies, the success of ageing in place programmes will depend on effortful alignments in the technical, organisational and social configuration of support.

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.

The organising vision for telehealth and telecare: discourse analysis.

OBJECTIVE: To (1) map how different stakeholders understand telehealth and telecare technologies and (2) explore the implications for development and implementation of telehealth and telecare services. DESIGN: Discourse analysis. SAMPLE: 68 publications representing diverse perspectives (academic, policy, service, commercial and lay) on telehealth and telecare plus field notes from 10 knowledge-sharing events. METHOD: Following a familiarisation phase (browsing and informal interviews), we studied a systematic sample of texts in detail. Through repeated close reading, we identified assumptions, metaphors, storylines, scenarios, practices and rhetorical positions. We added successive findings to an emerging picture of the whole. MAIN FINDINGS: Telehealth and telecare technologies featured prominently in texts on chronic illness and ageing. There was no coherent organising vision. Rather, four conflicting discourses were evident and engaged only minimally with one another's arguments. Modernist discourse presented a futuristic utopian vision in which assistive technologies, implemented at scale, would enable society to meet its moral obligations to older people by creating a safe 'smart' home environment where help was always at hand, while generating efficiency savings. Humanist discourse emphasised the uniqueness and moral worth of the individual and tailoring to personal and family context; it considered that technologies were only sometimes fit for purpose and could create as well as solve problems. Political economy discourse envisaged a techno-economic complex of powerful vested interests driving commodification of healthcare and diversion of public funds into private business. Change management discourse recognised the complicatedness of large-scale technology programmes and emphasised good project management and organisational processes. CONCLUSION: Introduction of telehealth and telecare is hampered because different stakeholders hold different assumptions, values and world views, 'talk past' each other and compete for recognition and resources. If investments in these technologies are to bear fruit, more effective inter-stakeholder dialogue must occur to establish an organising vision that better accommodates competing discourses.