RESUMEN
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.
Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Servicios de Salud para Personas con Discapacidad/normas , Servicios de Salud para Ancianos/normas , Evaluación de Necesidades/normas , Telemedicina/métodos , Actividades Cotidianas , Anciano , Anciano de 80 o más Años , Cuidadores , Personas con Discapacidad , Femenino , Anciano Frágil , Servicios de Atención de Salud a Domicilio , Humanos , Masculino , Persona de Mediana Edad , Aceptación de la Atención de Salud , Investigación Cualitativa , Apoyo SocialRESUMEN
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.
Asunto(s)
Instituciones de Vida Asistida , Vida Independiente , Dispositivos de Autoayuda , Anciano , Anciano de 80 o más Años , Envejecimiento , Femenino , Visita Domiciliaria , Humanos , Masculino , Persona de Mediana Edad , Medio Social , Apoyo SocialRESUMEN
In this article we explore the practical aspects of providing mental health information over the telephone, and discuss how this may be used to inform the creation of a website. We draw from an ethnographic study of an 'information and listening helpline'. By paying close attention to how the helpline operators 'take seriously' their callers' problems and requests--indeed, by taking the work of the phone operators seriously--we show that the operators artfully talk, categorize and translate to help the individual caller and to satisfy organizational demands. A website is seen by the helpline in question as a logical move to providing accessible information to a wider audience. Whilst web-based and phone-based services might both appear to function along similar lines for providing information, we question how a web-based system might afford or complement the kinds of services that can be done over the telephone.
Asunto(s)
Internet , Servicios de Salud Mental/organización & administración , Telemedicina/métodos , Telemedicina/organización & administración , Teléfono , HumanosRESUMEN
This article uses an ethnographic study of the design and deployment of an electronic patient record (EPR) system in the UK NHS to document some of the difficulties of integrating new IT systems with existing and developing practices, technologies and regulatory requirements. It highlights that 'integration' in this situation produces a variety of different but connected and potentially competing requirements that create difficulties in achieving artful and successful system deployment.
Asunto(s)
Sistemas de Registros Médicos Computarizados/organización & administración , Programas Nacionales de Salud/organización & administración , Integración de Sistemas , Antropología Cultural , Humanos , Reino UnidoRESUMEN
This paper presents findings from observational studies of work practice in two 'information giving' services - a poisons information service and a mental health helpline - as a precursor to informing the design of such services. Our work high- lights the interactions that constitute the requesting and giving of information and the role of intermediaries in the delivery of recipient-designed information. We propose a shift of focus from the logic of information in system design to one that encompasses the practicalities of information giving.
Asunto(s)
Líneas Directas , Informática Médica , Servicios de Salud Mental , Intoxicación , Medicina Estatal , Reino UnidoRESUMEN
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.
RESUMEN
This article presents some early, design-oriented research findings from a study that introduced mobile blogging technologies to four people who wished to make a health-related life change--giving up smoking. We wanted to establish the nature of the relationship between blogging and quitting smoking (if any), inspired by some earlier work in the domain showing that social technologies may help with the quit process. We present an account of three participants, documenting details of how blogging technologies fitted into their (changing) lives and examples of digital content they produced. We describe, using examples from participant blogs, instances of self-expression, replacement and self-awareness. We suggest, despite all participants failing in their quit attempts, that there are possible provisional, therapeutic characteristics to such social technologies. Finally, we suggest this therapeutic process can be understood better through a concept of personal translucence.
Asunto(s)
Blogging , Cese del Hábito de Fumar/métodos , Teléfono Celular , Femenino , Humanos , Masculino , Cese del Hábito de Fumar/psicología , Conducta SocialRESUMEN
Against the backdrop of discussions about the 'Information Society', the 'Informational Economy' and the role of IT in realizing organizational change we examine how representations of 'organizational knowledge' are constructed and used in work settings. We do this through the explication of ethnographic materials that detail the realization and use of Management Information (MI) in a major UK retail bank undergoing massive organizational change. We focus in particular on explicating how existing metric information was drawn upon to construct a representation of the work of the bank for those involved in managing that work. Systems designers have been increasingly interested in offering ways of conceptualizing the problem of 'knowledge' with a view to embedding these properties in systems. In the quest to develop representations of procedural knowledge to support work we argue that it is first necessary to understand how representations are actually created and used in work to support existing work practices.