Care at a Distance

Front matter

CARE & WELFARE

IN

M "E gi

Introduction

The telecare hype

Lack of knowledge

Noise and dust

This study

Various telecare practices Studying innovative technologies The chapters

PartI Norms and nightmares

Caring devices: About warm hands, cold technology and making things fit

Warm care, cold technologies What (un)makes a human?

Palliative care in Friesland Situating matters of disease Building relations through the white box Devices do not love us Fitting individuals

The notion of fitting

Care that does not fit

Modest aesthetics

The heart of the matter: Good nursing at a distance Goodness of fit The heart of good nursing Good nursing in practice The importance of space Division of labour Keeping up old standards: correcting telecare Telecare as an improvement: changing norms From health status to process From self-care to professional monitoring

New tasks, new goals Persistent values, shifting norms Contestable norms

Part II Knowledge and promises

Caring for the self? Enacting problems, solutions and forms of knowledge Shaping problems Mrs Jansen and the heart monitor Mrs Jaspersen and the webcam Enacted trouble: objective symptoms versus subjective experience Monitored disease Webcam worries Articulating problems Responding to problems Measurements Mutual support Enacting problems, engaging in self-care Fitting logics

Knowing patients: On practical knowledge for living with chronic disease The knowledge of patients Knowing patients?

Difference Sameness Indifference Tools for the case study: scientific versus practical knowledge Practical knowledge for clinicians and patients Practical knowledge of people with COPD Introducing 'know-now' Transporting knowledge Technologies and translation Coordinating knowledge Coordination practices, blurring distinctions Unhelpful knowledge, translation failures Knowing patients Practical knowledge and webcams

Part III Routines and efficiencies 6 Zooming in on webcams: On the workings of a modest technology

57 60

Doing invisible work

Webcam practices Webcams in action

‘It is much more personal than the telephone’

Webcams intensify concentration Breaking the intensity

Together in the same room

Trust, familiarity and intrusion

Building on existing relations

Magnifying relational distance

What webcams do

Shaping care practices

Modest technology

Economies of care: New routines, new tasks What's in a routine?

Routine efficiency Telecare and efficiency Efficiency in practice The place of caring Reshuffling space Different technology and tasks Interpretation routines The telekit as an umbilical cord The telekit as an inhaler Routines and identities Old or new routines?

Treacherous routines Efficiently organising messy practices

Conclusions: On studying innovation

The politics of innovation

The object of research: innovative telecare practices

Research that does not fit Fixed variables and unpredictable outcomes Subjectivity and practical knowledge Interference with construction sites From subjectivity to normativity

Fitting research

Uncontrolled field studies

The influence of users

From buying, selling and voting to enacting innovations

Articulating positions

The status of articulations: comparisons and involving others

CONTENTS

The status of practical knowledge 147

Discussions unleashed by an uncontrolled field study 148 Promises, practices and close patients 148

Close professionals 149

Close technologies 150

Close research 150 Acknowledgements 153 Appendix: Projects studied for this book 157 Notes 161 References 181 Index of names 197 Index of subjects 199

NIGHTMARES, PROMISES AND EFFICIENCIES IN CARE AND RESEARCH

I Introduction

The telecare hype

‘Telecare’ is an umbrella term referring to the technical devices and professional practices applied in ‘care at a distance’, care that supports chronically ill people living at home." With telecare, the formal or informal carer is not in the same place as the person receiving care. Instead, carers use new communication tools such as webcams, electronic monitors, email and websites to interact with patients, transmit data and provide instruction. Strictly speaking, the telephone is also a distant-care device and it is often central to making telecare practices work. The term telecare, however, commonly refers to the new technical arrangements for care or, as the critics might say, to a new hype in care.”

Hype is indeed a part of the introduction of telecare in health care. Innovations in telecare have seen optimists and pessimists hurrying onto the soapbox to proclaim their opposing views. Innovative practices are by definition not well researched, and these soapbox speeches emphasise either their pros — the promises telecare is bound to fulfil — or their cons, the nightmares it will inevitably bring. + > ^

The promises heard most often in the Netherlands, where the research reported in this book took place, concern improvements in efficiency.” Telecare promises to support care for a rapidly ageing population, when fewer younger people will be available to care for a rising number of older people with chronic diseases. This will have an even greater effect because telecare promises professional long-distance carers reciprocal support from their patients. Decision makers portray modern patients as active, eager and well able to care for themselves.? They claim that telecare will help patients manage their own care even better. In addition to claims for the more efficient use of personnel capacity, there is a very different efficiency promise: telecare will reduce the cost of health care.? Both types of efficiency alternate in telecare proclamations (see Chapter 7).

The inevitable nightmares, on the other hand, are full of grim images of care turned cold. Older people, instead of moving into a care institution when their minds and bodies start to fail, will have to stay at home, surrounded by all kinds of cold mechanical devices, receiving no support from caring people. Carers of these alienated people will only discover that someone has passed away when the sensors stop reporting movement and vital signs. Professionals, often nurses, lie awake, imagining the fate of neglected patients and overlooking serious problems because nobody actually bothers to go out and see these vulnerable patients any more.'?