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Shaping ethical provision, care quality and design sensitivity in new health technologies

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In recent years the development of remote care systems, known as ‘telecare’, have attracted much attention in terms not only of market development for devices, but also in the light of shrinking budgets and claims about the effect of population ageing.  Yet telecare systems for older people have largely been developed by industry or in service contexts where attention has been given to efficiency, while their social and ethical implications have been neglected. Governmental and industry claims that telecare enables older people to play a more active role in managing their own independence, health and well being, and this is part of a wider shift towards increasing peoples’ individual responsibility for their health. ‘Ageing-in-place’ underpins almost all government/local authority telecare programmes, an approach which involves staying ‘at home’ as long as possible. But telecare is inherently complex, and thtelecaree largest group receiving home-based services is arguably one of Europe’s most vulnerable social groups, the oldest old.  This vision of care may oblige people to stay at home longer than is appropriate for them. While home telecare may have the potential to enhance independence, these developments should not be accepted uncritically, since how telecare shapes the experience of home may impact on quality of life in ways we don’t yet fully understand.

“We were worried about the implications of this technology”, says Celia Roberts, co-researcher on this project, along with Maggie Mort. “Telecare is supposed to ‘do’ care, but we argue that technology is not actually a ‘caring thing’”. She stresses how important it is to realise this technology “is not neutral”, and cannot just be put into someone’s home without thought about the social and ethical repercussions

headsetThrough ethnographic studies in four different countries (UK, Norway, Spain and Netherlands) which included in depth discussions with 18 older ‘citizens panels’, Celia and Maggie Mort explored experiences of telecare, from the older people using it, to the social workers trying to introduce it. The EFORTT project: Ethical Frameworks for Telecare technologies for older people at home, (insert link to EFORTT website) was funded by the European Commission. Celia describes one example from their research to exemplify her point:


"I’ll never forget I went with a social worker to visit an older woman who was having her telecare reviewed, and she hadn’t left the house for twelve months. Literally hadn’t gone out the door. She lived in a tiny bungalow… and she’d had telecare put in and was receiving daily face-to-face care, but there seemed to be no chance of going out, to the doctors, the hairdressers, or to the shops. It seemed to us that having telecare can turn your home into a kind of trap."
 
telecareCelia and Maggie consolidated their findings by creating an ‘ethical framework’, which is being used by local councils negotiating with telecare system providers, as well as voluntary sector organisations such as Age UK in its further development of the service. The Framework (link to booklet on EFORTT webpages) takes the form of a set of questions, which Celia and Maggie believe should be considered before telecare is introduced, to ensure it is suitable for older person/family. They say it is only through asking these critical questions that ethical implementation can be achieved. Each case is an individual case - and should be treated as such. ‘Systems need to allow for more communication between the different players in the telecare network, between the call centres, the social workers, the older people and families’.

Another key area in which Celia and Maggie recommended change was in the ‘monitoring centres’. These are essentially the hub of telecare operation, where if an older person’s gas detector goes off, for instance, the monitoring centre will receive an alert, and will call the individual through the telecare device to try to find out what’s happening, and whether they need to call for emergency services. The research team found a strong lack of importance given to this service.

telecaree"They are seen as just technical people… they answer the calls, they make sure the right people go. But we found that they do a lot of caring work - they have to do complicated assessments of situations, and they’re sometimes on the phone to people in a crisis before the ambulance arrives, so actually they have this incredibly stressful job."
 
The EFORTT project has recommended more support and training for these workers: “It was only through being there, observing on the spot that we could see the complexity and difficulty of the work’.


logoCelia and Maggie’s aim is to have social and ethical considerations brought in early in the technology and service design process, rather than as an afterthought. They wanted it to be recognised that this technology is not just ‘a piece of kit’ but a whole new way of life, and should be taken seriously. Older people, they found, are very keen to participate in the design process. “It’s really hard to influence practice. Provision is becoming privatised… and cost savings are seen as very important. But local authorities are concerned and are listening.” AGEUK has just commissioned a knowledge transfer report about EFFORT. The project features on the AGEUK website, with a blog and an appearance on The Wireless, AGEUK’s  radio station (now available on Podcast).

Summary of the papers that have been produced about the studies.

Roberts C, Mort M & Milligan C (2012) Calling for Care: 'Disembodied' work, teleoperators and older people living at home, Sociology, 46: 490-506 (Double peer reviewed article)

Mort M, Roberts C & Callen B (2012) Ageing with Telecare: care or coercion in austerity? Published 25 Oct, Sociology of Health & Illness (Triple peer reviewed paper)

Milligan C, Roberts C & Mort M, (2010) Telecare and Older People: Who Cares Where? Social Science & Medicine 72(3): 347-54 (Triple peer reviewed article)

Mort M, Roberts C & Milligan C (2011) Telecare and Older People: Re-ordering social relations, in von Schomberg, R. (ed) Towards Responsible Research and Innovation in the ICT and Security Technologies Fields, European Commission: 151-166. (Output from competitively funded EC FP7 research)

Roberts C & Mort M (2009) Reshaping what counts as care: older people, work and new technologies, ALTER: European Journal of Disability Research, Vol 3, No2, 138-58 (Double peer reviewed article)

 

Piece by Laura Clancy

 

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