VERSION 3 20/2/14 family carers
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 of people with memory problems who live in care homes, and what makes their
quality of life better or worse. 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 what makes it better or worse. 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 a family member or friend you see regularly is a resident in a care home that is
taking part in the study. Fifty care homes across England are taking part in all.
Do I have to take part?
No. It is up to you to decide whether or not to take part. 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 contact you to arrange a time and place to meet that suits you. This could
be your home, your relative or friend’s care home or our UCL office. They will then ask you
some questions about how good you think your friend or relative’s quality of life is. The
researcher will then visit you 4 more times over the next year and half to ask you these
questions again to see how your experiences might have changed.
What do I have to do?
We estimate it will take around 15 minutes for you to complete the questions about your
friend or relative’s quality of life on each of the five 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 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?
We cannot promise the study will help you or your relative or friend, but 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 or your relative or friend will not be identified in any
report/publication. 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.