People with learning disabilities identify key ethical issues with use of assistive technology and telecare


In 2010, the Scottish Government’s National Telecare Development Programme published a report on telecare and people with learning disabilities. The authors defined telecare as “the use of equipment within and outwith the home to monitor changing needs and risks, and to provide alerts and information that enable improved and informed responses to those needs and risks.” (Telecare and learning disability: Using telecare effectively in the support of people with learning disabilities, Kerr B et al)

In the case studies they presented, the examples of telecare they used included Pull cord alarms, temperature monitors, detectors (e.g. flood/smoke) as well devices such as Passive infrared (PIR) beam s which detect movement or lack of movement and
Medication reminders which use alarms to prompt people, for example when it is important that medication is taken at the same time every day.

Telecare has been suggested as a contribution to the support, protection, and quality of life of people with a learning disability as well as a possible source of reassurance to carers.

The authors of this study wanted to get the views of the potential users of telecare services on the ethical issues asscociated with the use of assistive technology and telecare

They worked with two focus groups. Each group met two times and they dicussed and validated the topic areas/results of a Delphi study on the ethical issues associated with telecare. One focus group was five people with learning disabilities and the second five people with dementia.

They found that participants’ ratings indicated they felt there were important ethical issues around seven areas related to assitive technology and telecare:

  • motivation for telecare,
  • risk,
  • assessment and review,
  • consent,
  • privacy,
  • social isolation
  • equipment installation.

The authors conclude by pointing out that their study was relatively small and exploratory in nature, but suggest that the themes the participants identified suggest areas for further research

They believe that their sample shows that people who use assistive technology and telecare have strong views on the ethical issues and before schemes f support are introduced, it will be important to hear these views and take them into consideration.

Ethical issues around telecare: the views of people with intellectual disabilities and people with dementia, Perry J & Beyer S., in Journal of Assistive Technologies, 6 1, 71-75

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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