Participant information sheet
for UCL Bereavement Study interviews
(Version 4 – 2 July 2010)
Please read this carefully before completing the consent form. You may wish to
bookmark this page or print it out to keep.
Project title:
The impact of sudden or unexpected bereavement – a research study of the impact of
sudden bereavement on the everyday life of young adults.
This study has been approved by the UCL Research Ethics Committee
[Reference number 1975/002 Date of approval: 28/07/2009]
Principal researcher: Dr Alexandra Pitman, Department of Mental Health Sciences,
UCL Medical School, Royal Free Campus, Rowland Hill Street, London NW3 2PF
Supervisors: Dr David Osborn, Professor Michael King, Dr Fiona Stevenson
Email: bereavementstudy@ucl.ac.uk
Thank you for completing the internet questionnaire. We would like to invite you to
participate in another part of this research project which involves a face-to-face
interview. You should only participate if you want to; choosing not to take part will not
disadvantage you in any way. Before you decide whether you want to take part, it is
important to read the following information carefully and discuss it with others if you
wish. If there is anything you do not understand, or you would like any further
information, please email: bereavementstudy@ucl.ac.uk
What is the purpose of this study?
The interviews are to add more detail to the information we collect from the internet
survey. We are interested in finding out your experiences of a sudden or unexpected
bereavement. It would be helpful to hear about its impact on your everyday life, the
help and support you have received, any additional things that you feel you would have
helped you, and the things that you found unhelpful or ineffective. One of the issues
covered is how other people have reacted to you because of the bereavement – e.g. not
knowing what to say, avoiding you, or making comments that made you feel
uncomfortable. These interviews will help us understand your experiences more fully,
and the information will be used in the report we write. We will communicate our
findings to NHS and voluntary sector organisations that provide bereavement services,
and also use the results to guide future research. It is hoped that this will improve the
services provided for you and for people in a similar situation.
Why have I been invited?
We have been given permission by 14 British universities to email all their students and
staff in order to reach bereaved adults aged 18 to 40. The universities have agreed to
help us because they feel this is an important research area. They are also keen to learn
from the overall findings of the study, to find out how their employee and student
support services can best meet people’s needs. The survey has already been piloted on
bereaved people who are in touch with voluntary organisations like Cruse Bereavement
Care, Samaritans, Survivors of Bereavement by Suicide, and Widowed by Suicide. These
organisations are also interested in using the overall results to help them respond to
young people more appropriately. However only the research team will have access to the
data, and we will only know who participates if the respondent chooses to include their
name. All the data we collect will be made anonymous. This means that when we analyse
it no individual who participates will be recognisable.
Who is on the research team organising the study?
We are a research team from the Department of Mental Health Sciences at UCL
(University College London), based on sites in Bloomsbury and at the Royal Free Hospital
in North Camden.
Dr Alexandra Pitman, Dr David Osborn and Professor Michael King are all research
psychiatrists, and Dr Pitman is carrying out this research as part of her PhD thesis. Dr
Fiona Stevenson is a medical sociologist in the UCL Department of Primary Care and
Population Health.
What do I do if I take part?
There is a question at the end of the internet questionnaire which asks whether you
would like to volunteer for an interview. If so you are invited to give your email address
and/or telephone number so that we can get in touch and arrange a convenient venue,
date and time. These details will not be passed on to anyone outside our research team,
and will only be used by us for the purposes of arranging an interview. Please note that
we will not be able to interview all those who volunteer.
The interview will last up to an hour and will be held either within our department at UCL
or within your university counselling service. The interview will be audio-taped so that
the interviewer can type out the material afterwards – a process called transcription.
The audio-tape and the typed document will not be marked with your name, and both will
be stored securely. See the section on Confidentiality below.
What are the possible benefits of taking part?
It is very important for researchers and healthcare professionals to know the views of
bereaved people such as yourself so that we can plan the services provided. We hope
that you may find it helpful to have an opportunity to talk about these issues. For those
who attend a face-to-face interview we will pay your travel and childcare expenses in
acknowledgement of the time you have given up to take part.
What are the possible risks of taking part?
Some people find that thinking or talking about their situation makes them upset or sad.
The interviewer will be able to reassure you if you become distressed, and if you wish
you will be able to take a break, or to leave at any point. On the study website there is a
list of bereavement support services and this list will also be available at the interview.
In the event that the interviewer feels that you require urgent psychiatric help, or that
information you have given has implications for: i) child protection, ii) risk to others, or
iii) professional malpractice, they do have a duty of care to inform the relevant
professionals. The most likely person we would need to contact would be your general
practitioner. This would be part of our professional responsibility to manage any risks of
harm. We would obviously discuss this with you before the interview, and explain who
would need to be informed if that unusual eventuality arose.
Can I withdraw at any time?
Yes. You do not have to take part in this study if you don’t want to. If you decide to take
part you are still free to withdraw at any time and without giving a reason, either before
or during the interview. This will not be known to anyone apart from yourself and the
research team. Your university will not be aware of your participation or nonparticipation.
What happens when the study ends?
The results will be analysed and compiled into a report. This report and the key findings
will be available via the UCL Bereavement Study website. No individual respondent will
be identifiable from this information. Copies of the report will be available on request.
The results will be fed back to all those providing bereavement support services in the
UK. These will include general practitioners, other NHS services, voluntary organisations
(eg. Cruse Bereavement Care, Samaritans, Survivors of Bereavement by Suicide),
university support services, the Department of Health, and the general public.
Future work
We also hope to conduct a follow-up study in a few years time to explore whether there
are any changes in how people adjust to a sudden bereavement over time. Anyone who
takes part in the internet questionnaire or in the interview will be asked whether they
would be happy to be contacted about participation in a future follow-up study. This is
entirely optional, and if you do provide a contact address or number but later decide not
to participate, you are free to withdraw at any time. You do not have to give any reason
for withdrawing and your university will not be aware of your participation or nonparticipation.
Confidentiality
All data will be collected and stored in accordance with the Data Protection Act
1998. This means that all of the information we collect will be treated as confidential.
It will not be added to your staff or student records at your university. We will also
make sure that information is stored securely and in an anonymous form (this means that
your information will not be stored in a way that means it can be linked directly to you).
The audio-tape, typed documents, and all other data for this study will be stored
securely at UCL and will not be available to anyone outside the research team.
The only exception where a breach of confidentiality might be required is if during an
interview the interviewer felt that you needed urgent psychiatric help, or if issues arose
around child protection, risk to others, or malpractice. We would discuss this with you
before the interview, and explain to you our professional duty of care.
Giving informed consent to take part
We would now like you to think about whether you would like to take part in an interview
as part of this study. If so please enter your email address at the end of the
questionnaire where indicated or email us at:
bereavementstudy@ucl.ac.uk
Please note that before attending the interview you will be asked to read the
statements on the consent form below. At the interview you will have an opportunity to
ask further questions, and will then be asked to sign this consent form to show that you
agree to participate.
Thank you very much.
Dr Alexandra Pitman
Research Fellow
UCL Medical School
Informed Consent Form for interview participants
Private and Confidential
(Version 4 – 2 July 2010)
Please complete this consent form after you have read
the Participant Information Sheet above and/or listened
carefully to an explanation about the research
Project title:
The impact of sudden or unexpected bereavement – a research study of the impact of
sudden bereavement on the everyday life of young adults.
This study has been approved by the UCL Research Ethics Committee
[Reference number 1975/002 Date of approval: 28/07/2009]
Thank you for your interest in taking part in this research. Before you agree to take
part the person organising the research must explain the project to you.
If you have any questions arising from the Information Sheet or explanation already
given to you, please ask the researcher before you to decide whether to join in. You will
be given a copy of this Consent Form to keep and refer to at any time.
You are being to asked to give your consent to participate in a face-to-face interview
about sudden bereavement
Please complete the following participant’s statement:
I ………………………………………………………..

have read the notes written above and the Participant Information Sheet on the
study website, and understand what the study involves.

understand that if I decide at any time that I no longer wish to take part in this
project, I can notify the researchers involved and withdraw immediately. I do not
need to give a reason for withdrawing, and the university will not be aware of
whether I have participated in this study or not.

understand that my interview will be audio-taped and that any tapes and transcripts
will be anonymised and stored securely, for access by the research team only.

understand that such information will be treated as strictly confidential and handled
in accordance with the provisions of the Data Protection Act 1998.

consent to the processing of my personal information for the purposes of this
research study.

understand that the information I have submitted will be published as a report and I
will be sent a copy on request. Confidentiality and anonymity will be maintained and
it will not be possible to identify me from any publications.

understand that I am being paid for my travel and childcare expenses in assisting in
this research and that for reimbursement purposes some of my personal details will
be passed to UCL Finance for administration. These details will not go beyond UCL
Finance.

agree that my non-personal research data may be used by others for future
research. I am assured that the confidentiality of my personal data will be upheld
through the removal of identifiers.

accept that if I tell the researcher about something that could lead to me or
someone else being harmed, they may need to tell my general practitioner or other
professional about this.

agree that the research project named above has been explained to me to my
satisfaction and that I agree to take part in this study.
Please sign and date below and then give this form to the interviewer:
Signed …………………………………………………
Date……………..
Name in Block Letters ………………………………………………………….
Signature of Interviewer…………………………………………………………
Name in Block Letters ………………………………………………………….
Date……………..
Thank you for agreeing to participate in this study. We very much appreciate your help.
Future work:
If you would be prepared to be contacted in a few years time as part of a follow-up
study please tick this box  and provide contact details (email or postal address) that
will be valid for a few years. Please note you do not have to give your real name.
Name (in block capitals): ……………………………………………………………………
Contact email or postal address:
…………………………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………………………………
(Please note that ideally this should be valid for approximately 5 years)
If we do contact you in the future about this study we will of course provide you with a
separate Information Sheet and Consent Form. Thank you very much.
Dr Alexandra Pitman
Research Fellow
UCL Medical School