VERSION 5 28/5/14 staff
ROYAL FREE AND UNIVERSITY COLLEGE
MEDICAL SCHOOL - DIVISION OF PSYCHIATRY
University College London
Charles Bell House
London W1W 7EJ
Tel: 0207 679 9367
Participant Information Sheet
Quality of life in care homes study
We would like to invite you to take part in a research project. We want to find out about the
quality of life people with memory problems who live in care homes experience, and how the
ways that care home staff manage difficult situations might affect this. We plan to use this
information to develop a new training programme for care home staff to improve resident’s
quality of life. Before you decide whether to take part it is important that you understand why
the research is being done and what this study will involve. Please take time to read the
following information carefully and discuss it with relatives, friends, and colleagues if you
wish. Ask us if there is anything that is not clear or if you would like more information.
 Part 1 tells you why the purpose of this study and what will happen to you if you take part.
 Part 2 gives you more detailed information about the conduct of this study.
Ask us if there is anything that is not clear or if you would like more information. Take time to
decide whether or not you wish to take part.
Part 1
What is the purpose of the study?
We want to find out about the quality of life people with memory problems who live in care
homes experience, and how the ways staff cope with situations might affect this. We plan to
use this information to develop a new training programme for care home staff to improve
resident’s quality of life.
Why have I been invited?
Because the care home you work for is taking part in the study. Fifty care homes across
England are taking part in all.
Division of Psychiatry
Charles Bell House, 67-73 Riding House Street, University College London, London, W1W 7EJ
Tel: +44 (0)20 7679 9367
r.bedder@ucl.ac.uk
http://www.ucl.ac.uk/psychiatry
Do I have to take part?
No. It is up to you to decide whether or not to take part, and your employment rights will not
be affected in any way by your decision. If you do you will be given the information sheet to
keep. You are free at any point to withdraw without giving a reason.
What will happen to me if I take part?
A researcher will meet with you at the care home in private at a time that suits you. They will
then ask you to complete some standard questions about how you cope with the stresses of
caring. They will then ask you some questions about some of the residents you look after,
including questions about your views of their quality of life and wellbeing.You will also be
asked to answer questions about the strategies you use to cope with the stresses of caring
and problem behaviours, including those which might be considered abusive. This data will
be collected separately and your answers will be anonymous.
What do I have to do?
The researcher will ask you to complete a questionnaire about strategies you use to cope
with the stresses of caring. This will take around 5-10 minutes.
The researcher will also ask you questions about the health and wellbeing of the residents
you work closely with who have agreed to take part. We estimate this will take around 40
minutes on the first occasion, and 15 minutes on subsequent occasions.
What are the possible disadvantages and risks of taking part?
We don’t expect the survey to be upsetting, but if taking part brings up issues for you that you
would like to talk about you can ask to speak to one of our team. You may also find it helpful
to ring the Alzheimer's Society National Dementia Helpline on 0300 222 1122. The Helpline is
usually open from 9am to 5pm Monday to Friday and Saturday and Sunday 10am - 4pm.
What are the possible benefits of taking part?
The information we get might help us develop ways to improve the quality of life of people
with memory problems living in care homes.
What if there is a problem?
Any complaint about the way you have been dealt with during the study or any possible harm
you might suffer will be addressed. The detailed information on this is given in Part 2.
Will my taking part in the study be kept confidential?
All interviews are confidential and you will not be identified in any report/publication. The care
home management will not know who participates or declines to participate, nor any results
of the questionnaires. The questions about helpful and abusive acts towards residents, will
be anonymous. You will post these responses separately in a sealed box and we will not be
able to identify you. We will know which care home the form was completed in and will tell the
care home manager about any concerning abuse reported, although neither the manager nor
us would know who had reported this. With regard to other parts of the survey, if any person
in the study tells us that they or someone else is being harmed we will ask their permission to
disclose the information to the care home manager or other appropriate responsible person.
We respect confidentiality but cannot keep it a secret if anyone is being harmed.
Contact
Please contact Adam Kadri, Administrative Assistant on 0207 679 9367 or at
a.kadri@ucl.ac.uk for further information.
This completes Part 1 of the Information Sheet. If the information in Part 1 has interested you
and you are considering participation, please continue to read the additional information in
Part 2 before making any decision.
Part 2
What if there is a problem?
If you have a concern about any aspect of this study, you should ask to speak with Dr
Claudia Cooper (principal investigator for the study) (0207 679 9250) who will do her best to
answer your questions. If you remain unhappy and wish to complain formally about any
aspect of the way you have been approached or treated during the course of this study, you
may contact the Research Governance Sponsor of this study, University College London.
Please write to UCLH/UCL Joint Biomedical Research Unit, R&D Directorate, Rosenheim
Wing, Ground Floor, 25 Grafton Way, London WC1E 5DB quoting study 08/0043.
In the unlikely event that something does go wrong and you are harmed during the research
and this is due to someone‘s negligence then you may have grounds for a legal action for
compensation against UCL but you may have to pay your legal costs.
What will happen to the results of the research study?
We intend to publish results in relevant conference proceedings and publications. Please tell
the researchers if you would like a copy of any publications and we would be happy to send
them to you when they are published. You will not be identified in any report/publication.
Who is organising and funding the research?
The research is organised by University College London and funded by the ESRC & the
NIHR.
Who has reviewed the study?
All proposals for research using human subjects are reviewed by an Ethics Committee before
they can proceed. This proposal was reviewed by Harrow Research Ethics Committee.
You will be given a copy of the information sheet and a signed consent form to keep. Thank
you for considering taking part or taking time to read this sheet.
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