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Interview: The Trouble With Telecare

 

Dr. Maggie Mort

Dr. Maggie Mort


As the population ages, governments and industries argue that telecare technologies, such as alarms and sensors, can reduce health costs and enable individuals to remain in their homes for longer.

But research from Europe warns home-based monitoring systems leave much to be desired.

Over a three-year period, researchers in England, Spain, Netherlands and Norway studied telecare and how it affects the lives of older people living at home.

The researchers talked to older adults in their homes. They interviewed telecare providers and operators, nurses, social workers and engineers who install telecare devices in people's homes. And they convened a series of citizens' panels of older people and carers to discuss different telecare solutions.

The study findings appeared online in the Sociology of Health & Illness on October 25, 2012.

Read the final research report here.

AHB reached project coordinator Dr. Maggie Mort at Lancaster University in Lancaster, Lancashire, U.K.

Ruth Dempsey: What sparked your interest in telecare technologies?

Maggie Mort: We began from the observation that huge investments were being made in home telecare technologies without sufficient consideration of their social and ethical implications. Many initiatives are industry-driven and most research we could find was largely uncritical.

We wanted to see how the systems worked in real settings: inside older people's homes. And we wanted to discuss the possible role of technology in helping older people stay independent.

RD: The research highlights the many different ways people live with telecare. One physically-active wheelchair user touted the pendant alarm . . .

MM: Yes, this U.K. respondent, Julie, talked about how her pendant alarm gave her the confidence to do things she wouldn't otherwise have risked trying.

Julie is an active member of her local Older Peoples' Forum and also volunteers at a local dementia centre. She uses a pendant alarm system while she is at home and told us that she felt safer about attempting physical actions because she could press the alarm if something went wrong.

Julie told us that, in the nine years she's had the system, no one had ever asked her about the role it plays in her daily life. She said she would like to be able to go out into the garden with the alarm and even use it at friends' homes, since it only works inside her own house.

RD: Another participant used the pendant only on certain occasions.

MM: This is an example of how a number of older people associate wearing a pendant not with independence, but with weakness, illness and vulnerability.

So these users would accept the system, often mainly to please relatives, but wear the pendant only occasionally when they were doing something a bit "risky." Marta talked about deliberately putting it on when she needed to use the stepladder in her flat.

RD: Others rejected the system altogether, or asked to have it removed shortly after installation . . .

MM: We found that many devices were "prescribed" but were never used. They were too complicated, poorly functioning or simply not wanted.

The falls monitor, which is worn around the waist, was particularly unpopular. It often triggered false alarms, which caused distress and inconvenience.

Mary's fall monitor was kept on the mantlepiece. Her most pressing needs were for pain relief and for company. The falls monitor offered help on neither front.

We found that the bed monitor (a flat device placed under the mattress) was also notoriously troublesome. These devices would be installed as part of a package, additional to the pendant alarm.

But many older people and their relatives did not fully understand how they worked, and there was scant evidence of follow up from the system providers.

RD: Telecare providers were concerned about older adults using devices to strike up a conversation with operators?

MM: There were many stories about this. Typically, older people who were lonely would use the pendant alarm or other automated devices (where if no movement is detected a call is triggered from the telecare centre) to engineer a conversation. We thought this was actually rather ingenious. They didn't want to bother relatives or carers but to chat.

But, "just" having a chat is not what the systems are designed to provide. Such behaviour is even termed misuse by some service providers.

However, the call centre operators mostly understood the importance of this kind of contact. They gradually built up a relationship with these callers and offered a form of care which was not formally recognized as part of their job.

RD: I was surprised to learn telecare installers received little training.

MM: So were we. While the systems are relatively simple to install, the social aspects of the work are often very challenging.

So the installers might arrive at a person's house and be told they system is not wanted after all, either because the resident had forgotten agreeing to it, or they had agreed to please others.

Or, installers might find that what has been recommended is actually not suitable because of domestic or family arrangements, or even for technical reasons.

RD: Meanwhile, company websites tout telecare as a universal solution: "the path to peace of mind." But the findings indicate "one size does not fit all." What needs to be done?

MM: Our work with older citizens panels indicated that older people want to be involved in the design of telecare systems. In fact, they have great ideas for developments and improvements, but they are often excluded from participating in design practices.

We have recommended a process of ongoing engagement where service providers and telecare developers involve groups of older people more closely in the design of telecare technologies.

Secondly, when a telecare system is installed, it shouldn't be seen as the one-off installation of a fixed system but rather a system that is open to evolution. In other words, feedback loops should be built into the installation and implementation process so older adults are engaged and creative users of telecare.

Thirdly, there is a need for more flexible systems so older people can use them for "social" reasons, rather than the present care dominated usage.

Editor's note: This article first appeared in the March/April 2013 issue of AHB.

In our upcoming issue: new research from the Netherlands finds older adults willing to use sensors to remain in their homes.