Meet some of the researchers that have presented at research panels
‘The concerns of carers of people with dementia when the people they care for are alone'
A research project presented by Jason Leake on 12th March 2013
About the project
Jason Leake is a PhD student, funded by the RCH PhD Scholarship in Dementia Research. Jason is looking at new ways of applying information and communications technology to improve the wellbeing both of people with dementia and their carers. Jason’s supervisors are Professor Chris Eccleston and Dr Edmund Keogh (both University of Bath), and Dr Nigel Harris (Bath Institute of Medical Engineering).
The Carers’ Panel looked at a questionnaire that Jason is developing. This study asks carers of people with dementia about their perceptions of the safety risks faced by those that they care for when they are alone, and follows this up with questions about real incidents. Jason had several specific issues which he needed help with, as well as wanting general feedback. Once the questionnaire is finalised he plans to find participants to complete it via the Alzheimer’s Society.
The feedback from the panel
The general feedback from the panel was that the layout was generally fine, although some of the questions could be better worded. Some questions were difficult to answer and should be changed to multiple choice, which has now been implemented. The panel also recommended that the word "concern" should not be used so much, since it was repeated several times and therefore could be quite emotive. An important new risk which he had not previously identified was raised, which was the use of credit card for online purchases - this probably reflects that previous studies, which Jason had looked at to inform his own project, were done before Internet use became widespread.
The most important issue which the panel identified was that questionnaire was much too long at 70 questions, and that ideally it should be about half the length. It is hard to ask everything required in 35 questions but it has been reduced to 45, mostly by cutting back the questions about actual incidents and the degree of dementia. The panel also advised that the survey could be broken up by adding instructions which allow participants to do one section at a time and then return to it. There were lots of specific comments too, for instance that gas should be added to the list of fire, water and electricity concerns, and that a particular question about which concerns are most important should be changed so that people don't have to flip back through previous questions.
In summary
Jason would recommend anyone undertaking this sort of study to present it to a Carers’ Panel first. The experience was extremely informative and perceptive, and their advice has made a real difference to the quality of the questionnaire and to the research.
