Ageing with telecare: care or coercion in austerity?

Authors


Maggie Mort, Department of Sociology, Lancaster University, Lancaster LA1 4YT, UK
e-mail: m.mort@lancaster.ac.uk

Abstract

In recent years images of independence, active ageing and staying at home have come to characterise a successful old age in western societies. ‘Telecare’ technologies are heavily promoted to assist ageing-in-place and a nexus of demographic ageing, shrinking healthcare and social care budgets and technological ambition has come to promote the ‘telehome’ as the solution to the problem of the ‘age dependency ratio’. Through the adoption of a range of monitoring and telecare devices, it seems that the normative vision of independence will also be achieved. But with falling incomes and pressure for economies of scale, what kind of independence is experienced in the telehome? In this article we engage with the concepts of ‘technogenarians’ and ‘shared work’ to illuminate our analysis of telecare in use. Drawing on European-funded research we argue that home-monitoring based telecare has the potential to coerce older people unless we are able to recognise and respect a range of responses including non-use and ‘misuse’ in daily practice. We propose that re-imagining the aims of telecare and redesigning systems to allow for creative engagement with technologies and the co-production of care relations would help to avoid the application of coercive forms of care technology in times of austerity.

Rhetorics of the threats and burdens posed by ageing populations are increasingly ubiquitous and such discourse is frequently accompanied by stress on the imperatives of achieving efficiency and adopting new care technologies. In the context of austerity, it is important to situate the universalising rhetoric employed in policies on ageing in place and related technologies within specific socio-material arrangements and lived experiences. This article focuses on one such development: home telecare based on remote monitoring systems. Remote care systems have recently proliferated in a largely market-driven context, underpinned by policies based on the understanding of ageing as a medical and economic problem. Such policies purport to promote ‘healthy ageing’ and ‘ageing in place’ but they also frame population ageing itself as a serious social burden.

In Technogenarians: Studying Health and Illness Through an Ageing, Science, and Technology Lens, a special issue of Sociology of Health & Illness (Joyce and Loe 2010a), the perspective is overwhelmingly of older people as engaged and creative users of a range of technologies from drugs to walking aids, mobile phones and even robots. Elaborating the call to ‘gray the cyborg’ (Joyce and Mamo 2006: 100), editors Joyce and Loe (2010b: 172) argue that technogenarians are ‘individuals who create, use, and adapt technologies to negotiate health and illness in daily life’ and that such creative engagement represents a resistance of the biomedicalisation of ageing and the figuration of older people as passive users of medical and care-related technologies. A parallel approach is taken by Winance (2010: 11), drawing on disability studies and science and technology studies, who analyses the relationship between disabled people and care technologies as ‘shared work’, a process of tinkering and negotiating until a ‘suitable arrangement’ is reached.

Describing a range of such technologies, however, Joyce and Loe (2010b: 175) also note that ‘[u]nequal economic, social, and political relations will have an impact on how individuals use or do not use biomedical and environmental applications’, acknowledging that ‘[t]hese innovations raise important questions about power, inequality and elder-focused surveillance technologies’. Individuals’ capacities to become technogenarians are profoundly shaped by economic and social forces, as can be seen in Wigg’s study comparing technologies for managing ‘wandering’ in older people living with dementia in two settings: a locked ward of a care facility and a private residential setting (three times as costly). In the latter, the doors were unlocked, but a motion detector alarm went off when a resident entered or exited the front desk area. Such residents could then be accompanied outside by staff. Wigg persuasively argues that the residents of the former were dehumanised and frightened by the locked doors, while the quality of life and health of residents in the latter was improved by the opportunity to ‘wander safely in the company of a care provider’ (2010: 288). Here, alarms facilitated ‘a partnership … between wanderer and care provider’.

Studying how nonagenarian women living alone at home engaged with a range of high and low-tech devices, Loe (2010: 332) found that care technologies that ‘can be used to reveal and reinforce social networks, ensure continuity across the life-course (when it comes to everyday routines and roles), and enable intellectual participation and physical wellbeing’, were highly valued and used. Such technologies included electric scooters, rock salt, reclining chairs, pain medication, tea, pendant alarms, computers and, most importantly, telephones. Others that thwarted the women’s ‘ability to do self-care mostly on their own’ were rejected: sometimes, for example, remote monitoring systems were felt to be intrusive. Some participants established grassroots networks of support amongst friends, phoning each other every night or morning. While this clearly demonstrates participants’ desire and capacity to take care of themselves, it underscores the importance of social connectedness and access to material resources to undertake these activities.

Both studies show that technologies aimed to promote the safety and wellbeing of older people have a range of effects and thus need to be studied in action across a range of sites. While we agree that many older people engage actively with some technologies, our study of policy and practice around remote care technologies for ageing people in the UK and Spain prompted a concern with the coercive potential of systems installed in the homes of older people with complex needs, particularly in contexts of shrinking healthcare and social care budgets in which demands for care are said to be unsustainable. In this article we join the technogenarians’ debate and extend its empirical scope, drawing on our study of telecare in which alarm devices and detectors are installed around the home and are connected to a central hub which transmits information and sound to a remote monitoring centre.

This technogenarian turn shows the value of bringing together sociology of health and illness perspectives and science and technology studies (see also Peine and Moors 2010). Insights from science and technology studies research have shown incisively the problem of seeing technologies as unproblematically benign, untouched by social conditions and patterns of inequality just because they are technical (Berg 1999, Mackenzie and Wajcman 1999). As socio-technical systems, telecare developments reflect their contexts of policy, design and practice and particular versions of their users are written into them (Akrich 1992). Important critiques have also been made of the identification of users (Suchman 2006) and of the ways in which users and non-users matter (Oudshoorn 2011); critiques germane to our analysis of the empirical material of telecare in use. We are also informed by the concept of empirical ethics as elaborated by Mol (2008) and Pols and Willems (2011).

This framework allows us to show, through concrete examples of home telecare systems funded by local Spanish and UK authorities, how they leave little scope for older people’s creative engagement and adaptation of these systems. However, we also argue that telecare services could be designed to allow space for daily experimentation, mutual appropriation and creative and innovative socio-technical practices, thus avoiding their coercive potential.

Ageing rhetorics and normativities: the ‘silver tsunami’

The proliferation of terms such as ‘demographic ageing’ and forms of measurement such as the ‘age dependency ratio’ (the share of the population aged under 20 and over 64 as a percentage of the group aged 20–64) and the way these are employed in commercial, policy and some practice contexts, act to frame older people themselves as essentially problematic. In living longer they are seen to place an unsustainable economic burden on care services (Mort et al. 2009). Such stigmatising and ageist rhetoric forms the backdrop to exhortations that older people must remain independent and stay in their own homes. For example, an Economist report into healthcare provision in times of austerity included a section entitled. ‘the approaching storm’:

… demand for healthcare services is expected to rise at a faster pace than GDP in the next five years, driven by an expanding, ageing and increasingly well-informed population, a rise in benefit levels provided by payers, advances in medicine and the steady rise in the incidence of chronic disease … While Britain’s health system is likely to remain better protected than other public services, it will nonetheless face hard choices in the near term. First and foremost among these is to shoulder the demands of an ageing population which is already putting pressure on both hospitals and primary care, and which will require escalating expenditure on long-term care … But as the system faces its toughest funding environment in decades, along with the mounting pressures of an ageing population with complex chronic health needs, prospective reformers find themselves at a crossroads. (Economist Intelligence Unit 2010).

Such arguments are also presented at research events. At an eHealth workshop held in Barcelona, the audience was told by a healthcare software developer that Spain and the UK faced a similar ‘tsunami’ of older people:

Software solutions needed for social care ‘silver tsunami’

The chief executive of a UK software company has warned that the global social care ‘silver tsunami’ can only be overcome with the use of all available technologies and software solutions. (Advanced Health and Care 2009)

They are also reported in newspapers. Here the ‘age time bomb’ image has the effect of implicating older people in the current financial crisis:

Britain’s age time bomb: cost of 1.4m extra pensioners ‘means NHS cannot stay free’

Britain faces a bleak future of higher taxes and a rising deficit if ministers continue to increase spending on state pensions and the NHS … The country is facing a demographic time bomb with the number of over-65s set to increase by 1.4 million over the next five years … think tank Reform warns that this ageing population threatens to overwhelm the Coalition’s attempts to bring down the UK’s biggest ever peace-time deficit. (Walker 2011)

Population ageing is described as an ‘avalanche’ in the following extract, where government faces this issue in the middle of a recession and where women may be less willing to step into the caring role:

The economic crisis is perhaps letting politicians off, for a time; they don’t seem to understand the avalanche is coming over them. There is no plan for building old people’s homes where needed and geriatric hospitals and nursing homes are still pending. Are they confident that women will be still able to cover the social welfare they aren’t providing? (Morán 2010)

It seems to us remarkable that older people have become the focus of such stigmatising rhetoric over the past decade and that such discourse proliferates largely unchallenged. These negative rhetorics play a key role in the development of care policy and practice because they contribute to the conditions of possibility of living as an older person. As older people live longer they are strongly exhorted to achieve independence. Images of independence and active ageing are ubiquitous in the glossy brochures and company websites promoting the latest telecare packages, monitoring systems and even homecare robots. A nexus of demographic ageing, shrinking health and social care budgets and technological ambitions has promoted ‘staying in your own home’ as the ideal future for older people. The exponential development of remote care technologies is taking place within this context; new care technologies have attracted the strong interest of multinational companies. For example at the 2011 International Telecare and Telehealth conference in London, held by the Telecare Services Association, 45 companies exhibited and demonstrated telecare systems. As Loe (2010) reports, many research centres and companies are trying to integrate universal design by creating living environments that are accessible and effective for the whole range of ages and abilities.

Telecare solutions

In a climate of demographic ageing and ‘realistic’ social care provision, then, independence, often connected with the idea of ‘dignity’, becomes realisable through a range of devices allowing older people to ‘stay at home with telecare’:

The number of people requiring community based health and social care support, and the levels and complexity of those needs, is expected to increase considerably over the next decade … people will have higher expectations … They want independence, and after a life-time’s work, they want and are entitled to, dignity for life … Telecare is vital to unlocking this future … It is not realistic to plan to deliver care and support services in the way we do at present. (Department of Health 2005)

In England in 2006 the government launched the two-year Preventative Technology Grant, a total of £80 million to local authorities: ‘to enable councils to invest in telecare to help an additional 160,000 older people nationally to remain independent at home’ (Department of Health 2006). In Spain the introduction of a law on the promotion of autonomy and care for ‘dependent people’ in December 2006 included home telecare in its catalogue of services. This law gives priority to telecare, home help services and day centres. Regardless of its uneven implementation, the Institute for Elderly and Social Services and the Spanish Federation of Municipalities and Provinces signed an agreement to set up a state programme for home telecare services. Gradually, more local institutions interested in establishing this programme have joined and between 2009–2010 there were 275,000 telecare public service installations in Spain financed by this agreement, in addition to private service users.

In England, because of shrinking budgets, home telecare systems are more likely to be installed where older people are assessed as having high levels of need; moderate levels are increasingly not attracting state support. We argue this creates a potentially coercive context for ageing-at-home. This is not to suggest that telecare is inevitably coercive, but that under certain conditions it has the potential to become so. (Of course, as established in disability studies, forms of co-present care also have the potential to become oppressive.) Telecare can become coercive when older people are intensively monitored by devices at home, where domiciliary care services are stretched and fewer residential care places are available. In this context older people’s options can become closed; they become obliged to live in a ‘telehome’. Policies advocating telecare as assuring independence, giving ‘peace of mind’ and solving the ‘problem’ of ageing, are implicated in this coercion if they actually enhance isolation and dependence.

The closing down of options arising from the expansion of home telecare was raised by respondents in our study. Issues such as the automation of alarm calls triggered by movement sensors in the home, possible intrusion into personal space from bed sensors, for example, data generation and sharing issues concerning sensitive material about individuals and the different, and sometimes conflicting, needs of carers and users show something of the complex nature of any telecare ethics and the potential for implementation to be coercive. Indeed, it has been noted that many telecare products have developed from surveillance technologies used on children or prisoners under house arrest (Kenner 2008). Telecare sensor-based systems trigger alarms to call centres automatically or may link to family members via the Internet, collecting activity data that can be aggregated and analysed in a number of ways.

We are told in the crisis account of ageing that without telecare solutions disorder will flow from situations where too many old people are living too long, needing costly care and with too few (unpaid) caregivers to look after them. In this narrative, telecare offers structure, explicit processes and security (often termed peace of mind) in cases where elderly people are alone at home, vulnerable to falling over, becoming ill, leaving the gas switched on and so on. The telecare concept projects a (deceptively) linear path: prior assessment, equipment installation, operational protocols and response to a wide range of scenarios following an alarm triggered or a crisis call made via remote monitoring centres. However, given the complexity of its ambitions, it is remarkable that telecare is made to work at all. Among our observations was the remarkable degree of emotional labour involved in responding to alarm calls (Milligan et al. 2011) and the complex negotiations involved in installation work (Roberts et al. 2012).

Methods

We report on research undertaken within the EU FP7 Science in Society project, Ethical Frameworks for Telecare Technologies for older people at home. Together with partners in Spain, The Netherlands and Norway, we examined examples of remote care using both ethnographic and deliberative approaches, observing telecare practices and convening a series of older citizens’ panels to discuss and debate their aspirations for care and different telecare solutions. It was important to explore interactions between older people, telecare systems and devices, and the range of formal and informal carers involved.

While the whole project dataset comprises 96 transcribed interviews, field notes of 77 episodes of extended observation and transcripts of 22 citizens’ panels, the material reported here is drawn from the English and Spanish home telecare studies: 12, 33 and eight and 27, 23 and four, respectively. This is because their emerging systems are the most similar. In the English case we studied local authority commissioned telecare; in the Spanish case we researched municipally funded home telecare services provided by the Catalan Red Cross and a few cases of private services from different regions including Castilla La Mancha’s Red Cross rural service. The studies undertaken in The Netherlands and Norway focused on different forms of telecare: on home devices for chronically ill people, web-based and global positioning systems (GPS). Other papers and reports have been published or are in preparation about the project as a whole, in particular the Dutch and Norwegian studies.

We carried out observations at telecare project management meetings, in social work offices, older people’s homes, housing association offices and ‘smart homes’, practitioner training meetings and telecare monitoring centres and recorded interviews with managers, workers, older people and their families. Two rounds of citizens’ panels were held with a range of separate participants drawn from older peoples’ forums, care home residents and carers’ groups. The resulting material was first read and subjected to thematic content analysis by each of the teams who then selected extracts and preliminary analysis for translation and circulation. A two-day meeting for intensive analysis was held in Norway to consider and synthesise findings for the EU report and explore differences relating to a range of forms of remote care and specificities from the four national contexts.

At home with telecare

Some respondents in our study could be seen as technogenarians, actively engaging with the telecare devices they were prescribed. One physically active wheelchair user, for example, told a citizens’ panel meeting in England about the emotional and material significance of her pendant alarm:

I have a Lifeline [pendant alarm] and it gave me the confidence at home to do things … Having that pendant did give me the confidence – I had the confidence to move around the house. I would practise standing up and getting things because I knew that if anything had happened I could do that, if I hadn’t have had that I’d have thought ‘I’m on my own now, I’d better be careful’. When I go to my friend in XXX, I’m sat on her settee and I’m told not to move, you see I don’t have a Lifeline or anything there, you know, and I actually feel a bit trapped. That pendant round my neck gave me the confidence to do, or to practise, and to try things on my own, without somebody saying ‘oh you shouldn’t do that’… this is the first time in the eight years that I’ve had it, the first time I’ve actually sat here and said to anybody what it means to me, because nobody asked me.

Here, we can see a positive human–machine relationship that facilitates increased action and freedom. Wearing the pendant alarm allows this older woman to attempt movements that might otherwise seem risky, and hence to avoid feeling trapped. A similar response was made by a Spanish woman who lives alone:

Do you know when I wear it (the pendant)? … When I’m going to climb a ladder. Then, I do wear it … If I might fall, I put it on.

In other cases, telecare service had been important in an emergency. Gwyneth, who lives in a block of retirement apartments, described using her wrist alarm during a stroke. Interestingly, however, she used the telecare device to request help from a friend rather than to call an ambulance.

In contrast, other English and Spanish participants refused to use the installed telecare system in the prescribed way. They did not wear their pendant alarms or, more commonly, were selective about when and where they put them on. Others never used their falls monitors or asked to have the devices taken away shortly after installation. This was sometimes prompted by a perceived asymmetry between the device and the user’s identity, or the identity shift that the device appeared to call for. In the following extract an older woman and her granddaughter in Spain discuss the pendant alarm system. The user is ambivalent about the device and rejects the identity of a person who needs a particular form of extra attention in the form of telecare:

Older woman: Well, when I go to bed I do not use it, but I put it on my night table. My friends wear it all day long. Some do it, others don’t. I have to tell the truth. Some do it, others don’t.

Interviewer: And the friends who wear it … why do they do it?

Older woman: Because they are very …

Granddaughter: Because they are very cowards … aren’t they? You were about to say that. Because they are more insecure, worriers … aren’t they? Because they are clumsier, let’s say, eh?

Older woman: [My cousin] has had the service since the very beginning, when it started. They call her a lot as well. But she is very delicate, she is scared of everything. I am not a hypochondriac.

Refusing to use a device sometimes means encountering pressure from service providers or families. Below a Spanish user reports what could be seen as coercion: she talks about being ‘preached at’ and being ‘told on’ by those prescribing telecare. The clear message she receives from the service – that she should wear the device – is not one she wants to accept:

The fact is I don’t think I really need it now. I did it for precaution. I’m really well right now, constantly up and down, going out … And look, if I fall and I can’t get up well, bad luck! And well, once a month you test this thing to see that it’s working. And of course, the first day that I called, about a year ago, they asked me if I was wearing my necklace, and since they got me off guard, I didn’t lie! Then they preached at me, ‘Oh, but you have to wear it!’ And now, every time they ask me if I’m wearing it or not I say: ‘Yes, yes, yes!’ But please don’t go telling on me! At least I leave it next to me when I take a shower. You can get it wet and it’s alright, they told me that. But I put it on my hand because it’s so easy to slip and fall. In a blink you can be on the floor. And, well, I use it only in the shower, because as they say, the bathroom’s one of the most dangerous places. The rest of the time I have it hanging in the kitchen. And to be honest, I don’t want to wear it. My neighbour does though, and two others that I know of, but they are older.

In other cases, the lack of understanding of the devices or the system appeared to be the reason for its non-use. An English observation of a social worker review visit to an older person describes a user who keeps one of her prescribed devices (a falls monitor) on a shelf next to her chair. Although she pays careful attention to this device and is generally positive about telecare, she does not seem to understand that the device cannot work in the way it is designed unless it is worn on her body:

[After a serious fall, the client] now wears her pendant alarm all the time, except in the bath. She has ‘pull-cords’ in her rooms, a falls monitor, carbon monoxide monitor and extreme temperatures monitor. She seems only to know anything about the pendant alarm and pull cords – the falls monitor is sitting next to her on the shelf, next to the china dogs, pills, little tin pillbox and books. She tells us that it goes off if it tilts and says that she’s worried about it going off – she says she tells her cleaner to be careful. She doesn’t seem to understand it at all. The RASO [unqualified social worker] asks her if she wears it and she doesn’t seem to understand the question. The RASO asks her if it has a belt and she says yes. Later I ask her again if she ever wears it – she doesn’t. The RASO does not try to instruct her about the device or tell her to wear it. The older woman seems to be happy enough with the alarm round her neck. I later talk to RASO about the falls monitor – but she seems to be quite disengaged. It seems that she thinks it doesn’t matter much to the client, who has not ever had another fall.

It is interesting to note the acceptance shown by the RASO when faced with this client’s inability to use the device. This acceptance has a complex history: in the English study we found widespread ambivalence among social workers about telecare (and a few great enthusiasts), which sometimes resulted in a rather relaxed attitude towards educating users about the installed devices. In this case, the simpler pendant was seen to be doing the job of providing an emergency alarm: the falls monitor was figured as redundant (but, interestingly, not removed).

‘Misuse’ of telecare was less acceptable to telecare providers and service managers. Concerns arose in both studies when older people used telecare to meet needs other than those for which it was designed. Most notably, these were social needs: some clients ‘misused’ the service so they could have social contact with monitoring centre operators. In this field note from an English county-level telecare steering group, commissioning managers suggest misusers should have the system removed:

A discussion followed about the ‘misuse’ of the pendant amongst some older people. It was noted that the alarm calls to the monitoring centre were often triggered by the older person rather than by one of the sensors, indicating that it was often the older person themselves who wanted someone to talk with or visit them. The Project Leader suggested that perhaps one response was to take the pendant away, but others argued that this was not a good idea as there was a need to acknowledge that pressing the pendant for someone to come out was an important part of social care and they needed to acknowledge this response. Another suggested that where older people were ‘misusing’ the service, social services needed to review their case and assess people’s real needs. If this issue is driving the cost up, this needs to be acknowledged nationally with some assessment of what can be done about it, but evidence was needed first. It was emphasised that there was a need to assess the costs of escalating ‘false calls’ that had the potential to ‘clog up’ the call centre and put other ‘genuine’ users at risk because they can’t get connected. One of the service providers gave an example of a medication dispenser that was not used by an older person and which was later found in another site in the same building but not linked to the response line [that is, the older person had passed it on to a neighbour].

In Spain most examples of telecare ‘misuse’ were also about older people using devices to meet social needs for a little conversation and company (which are provided by teleoperators unless there are other alarm calls in the queue). Other misuse related to demands that were not viewed as the provider’s responsibility. Striking examples included a user asking for snow to be cleared from her front door and another asking for a glass of water in the middle of the night. In these cases, the operators try to explain where to direct such a query or they contact the person’s relatives. In both the Spanish and English cases (see López et al. 2011), call centre workers try to respond sympathetically to such calls. Sometimes such misuses are considered by the service as clues for detecting needs and demands that exceed the aims of the service, as expressed in this group discussion with Red Cross workers in Spain:

Worker 1: The telecare service can’t be denied to people.

Interviewer: Can’t you say to a person that she doesn’t fit this service?

Worker 2: For sure, but notice we are wearing a Red Cross on our backs. It’s Red Cross, ah?

Worker 1: We ask for reports to the local office … In the case of this person who called us 80 or 100 times a day, we asked for a social evaluation.

The Red Cross workers agreed that most removals were triggered by unexpected increases in telephone bills or a change in health status (death or moving to residential care). However, the coordinator of a privately funded service in Madrid suggested that cancelling telecare was a legitimate response to misuse:

That’s the service goal, to wear it within the house. If they do not wear it, I cancel their contract, because if they get a head injury, they are going to say that’s our fault. If they don’t accept our requirements, I’ll cancel the device.

In the English study we found that telecare installers sometimes acted strategically to avoid non-use or misuse. Here an installer describes working against the social worker prescription, leaving a prospective user’s house without installing any devices:

I met Kevin on Tuesday afternoon, to go out with him in his van to do an installation. We chat about how he got into this work. He has had no (formal) training – just applied for the job because he thought he could do it. He ‘knows one end of a hammer from another’. He was not given any training as an installer – just went out with someone else a couple of times and then was ‘thrown in the deep end’. We talk about how he decides what to install. He takes the social worker’s instructions (which he has printed out as a one-sheet form) as a guide only, really, he says. He reads through this sheet before he goes, notes what the social worker is recommending, then puts in his van what he thinks might also be needed. Kevin is very thoughtful about what is being recommended by the social worker and what might be better for the client. Sometimes he makes no installation at all. He tells me a story about going to install a pendant alarm and falls monitor for a woman who had a friend of 50 years living nearby. When he went to do the installation, the friend was there and said to the client: ‘But you wouldn’t ever press the alarm, would you?’ and the client agreed. The friend also said, ‘But you’ve never worn anything around your neck, have you? So you wouldn’t wear the pendant’. Also, it turned out that the woman’s carers come after she was out of bed and had already come downstairs. It seemed to Kevin, then, that there was no point in giving her a falls monitor, as she would have needed the carers to put it around her waist and by the time they were there, she was already through the most dangerous part of her day in terms of falling (coming down the stairs). So he ended up not installing anything (contrary to the social worker’s instructions, which he is supposed to follow).

Here failure to use telecare devices is avoided by a judicious technician. Unlike his social worker colleagues who at that time worked to enrol a predetermined target number of telecare users, he is not under any direct pressure to ensure that the devices go into homes. Stating that he will install devices only if the client is happy and understands the device, he joked that if he was ‘on commission’ he might do otherwise. For referring social workers or telecare providers, not installing telecare would have been seen as a form of failure: for this worker it was the decision most appropriate for the client.

Discussion: re-imagining telecare

In considering how telecare systems might be less coercive, we turn to the discussion by our Dutch colleagues Jeanette Pols and Dick Willems (2011: 495) of how to evaluate the ethics of care technologies:

To say that a technology is good does not merely point to a characteristic of the technology, as most evaluation studies seem to take for granted. Rather, this ‘good’ emerges when users and devices develop relationships.

The authors argue that evaluating technology requires learning: (i) ‘how it is domesticated or, in its early stages, tamed and unleashed; (ii) to what kind of practices the processes of domestication lead and (iii) the desirability of these practices’. This emphasis on relationships epitomises the empirical ethics approach of our European project. In studying telecare systems and how they work, we were not interested in abstractions or principles but in how goods are produced in the complex human–machine interactions constituting any telecare system. We see such interactions as ongoing and therefore fluid, and want to emphasise their life-enhancing possibilities as well as their coercive potentials.

The examples above are taken from many we might have chosen from our material of different ways of living with telecare. It is clear that technical devices themselves do not provide care, but collectives of humans and devices can bring care about. In this way, telecare and users are not separate entities but a socio-material practice. As Suchman (2007: 188) points out, the term user relates to the ‘identification of persons exclusively through their instrumental relations to machines’ and ‘the user singularizes what is actually a multiplicity and fails to differentiate actors with very different relations to a given artifact’. In the case of older people assessed as in need of care and subsequently given the identity of a telecare user, other identities and histories are occluded, like those that might be included in a broader sense of health, such as the identity of the user as a person with social and communicative needs but also with social capital and networks that must be ensured or even reinforced (Loe 2010: 332). While this multiplicity applies to all human–machine interfaces, in the case of the telecare dementia package such singularisation can be seen even more starkly. Simple dementia packages may include a bed sensor, door exit sensor and a carer alert system. Other systems include various forms of electronic tags and zonal GPS devices. Such off-the-shelf packages are by definition designed for users ‘not known, or knowable in advance’ (Suchman 2006: 188) and are thus universalising. Further, if the older person has high level or complex needs, dementia and a restricted income, the possibility of their creatively engaging with such a system is minimal.

In our study we conceived of telecare users as embodied, located at home with all the particular, cultural, historical, emotional and, not least, material complexity that the term home implies (Angus et al. 2005, Lehoux et al. 2004, Lie and Sörensen 1996). It became clear that while all kinds of actors negotiate telecare technologies as they try to make them work and to integrate them into their daily lives, we repeatedly found that monitoring or sensor-based systems, as funded by the local authorities in England or by the Red Cross in Spain, were rather closed to reshaping or creative engagement. Although some participants were managing to act in some ways as technogenarians, most were not. In the latter cases, systems were installed in the homes of older people who were struggling with everyday life and who showed little or no understanding of, or engagement with, the technologies they were supposed to use. Such installations appeared to be last ditch attempts to manage older people in their own homes and to make only negligible contributions to improving users’ daily lives.

In research with younger disabled people, Winance develops the concept of shared work to convey the mutual shaping of user and care technology. She analyses the practice of testing, trialling, shaping and choosing a wheelchair. In seeking to find the right device or to improve their comfort, wheelchair users in her study actively work with others towards compromises between the wheelchair’s material obduracies and the possibilities of its redesign. In this process, wheelchair users become ‘simultaneously an object and a subject of care’. Winance describes this work as care:

To care is to tinker, i.e. to meticulously explore, ‘quibble’, test, touch, adapt, adjust, pay attention to details and change them, until a suitable arrangement (material, emotional, relational) has been reached. (Winance 2010: 111).

So here, to care does not entail dual and antagonistic positions: one passive, who is cared for (the user) and the other active and skilled, who cares (the carer or the telecare system). Whether we are talking about humans or technological devices to care involves singular and differential multiple positions that mutually negotiate, demand, resist and reshape each other. Care then can be seen as a temporal and negotiated achievement that requires shared work.

In our study we saw how actors involved in telecare systems, whether older people themselves, carers, installers or care managers, struggle to shape what devices and systems mean and how these (might) work. They try to solve problems, sometimes by tinkering, selectively using or, in some cases avoiding telecare. Loe suggests that perhaps the answer to ageing in place has to do more with ‘existing technology repertoires and daily strategies to emphasise continuity and autonomy’ (2010: 331), rather than simply more assistive and biotechnologies or design strategies. Figure 1 shows a note given to us by a participant at the end of an older citizens’ panel meeting in which she describes her own ageing-in-place strategies.

Figure 1.

Everyday care strategies

The examples of practice found in our study demonstrate that it is not telecare itself that creates or even affords independence. Independence, or in this context we prefer to say agency, comes about through the mingling and mutual shaping of bodies and things, only some of which get labelled telecare. As we saw in the example of the wheelchair user who felt she could take more physical risks when she was wearing her pendant alarm, telecare devices work best when they do more than ‘what it says on the tin’. Having a pendant (even if you do not wear it) matters, but in located, intimate and always situated ways. Devices and materials matter but they do not work on their own. Users matter but not on their own: they are multiple and usage is an entangled, co-produced affair (Oudshoorn and Pinch 2005). We might argue that, contrary to the idealised scenarios in the glossy brochures, good (tele)care does not pre-exist the user but is an outcome of shared work.

Arrange things to give peace of mind

Tel. in every room

Key holders

My friend and I ring each other every morning

Neighbours know I am around when my curtains are opened

Approaching telecare as shared work means rethinking categories such as effects, effectiveness and causality. As Pols and Willems (2011: 495) remind us: ‘an innovative technology such as telecare cannot be regarded as a finite intervention that has predetermined types of effects that may be assessed in standard research’. How does telecare work at all? It does not do so on its own but through the (quality of) relations between things and people and connections. Clearly the very limited range of relations and creative use (or non-use) of telecare that can be found in lived realities raises questions about what ‘proper use’ is thought to be, and how this is reflected in the design and implementation of systems of home care. Our material shows that this varies across different contexts and that telecare should not be understood as a universal solution, as much of the industry and policy literature implies, but as a situated one.

In contrast to the technogenarians described in Joyce and Loe’s introduction (2010b), and to the younger disabled people in Winance’s work, most participants in our study did not actively engage with their telecare systems. The systems provided to them were relatively fixed and difficult to customise, tending to elicit only passive participation from older people except in an emergency. Attempts to use the system to meet social needs (by contacting the monitoring centre to talk) were strongly discouraged. Older people’s reluctance to use the devices they were given were generally ignored by formal carers, service managers and industry but sometimes led to the rather punitive removal of the devices. However, we suggest that recognising and respecting non-use or misuse might avoid telecare becoming coercive. Some telecare providers appeared sympathetic to more creative uses of telecare but the need for inclusive and flexible design and provision is poorly understood. In a climate of austerity ethical telecare services must guard against closing down daily experimentation, mutual appropriation and creative and innovative socio-technical practices.

In observing examples of how users of telecare encounter its systems and devices, we note the coercive potential of these systems, but we also begin to see how different ways of living with telecare might be possible. Although this point is unlikely to be pursued in the context of economic austerity and the reduction of services, our research also points to the possibility of realising different arrangements, configured within different narratives of ageing, technologies and care relations.

Acknowledgements

We wish to thank all the members of our older citizens’ panels; the older people who allowed us to visit them in their homes; the telecare providers and workers, and the social workers, managers and commissioners who gave us their time for observations and interviews. The study was funded by the European Commission FP7 Science in Society Programme, project no 217787, Ethical Frameworks for Telecare Technologies for older people at home. Research ethical approval was granted in the English study by the Northshire Council ethics committee. Approvals in Spain, The Netherlands and Norway were obtained in accordance with respective local and national requirements. We are grateful to our colleagues Miguel Domenech, Daniel Lopez, Tomas Sanchez, Christine Milligan, Ingunn Moser, Hilde Thygesen, Jeannette Pols and Dick Willems for their contribution to this project.

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