Parents’ information sheet
ver 3. 29 June 2004
Study of family and staff views of tissue
donations for childhood cancer research
Information for families
When someone has cancer or
leukaemia, doctors take
samples (small bits) of things
like blood, or part of a bone, or
part of a tumour, to find out
what is wrong and make the
diagnosis. These samples can
be kept so that later they can
be used for research to find
out about why cancer happens
and how it can be treated.
We would like to talk to
families who have had a child
with cancer about their views
about donating tissues for
research. We would like to
invite you to take part in this
interview study.
Before you decide to take part
in the study it is important
that you understand what it
would involve for your family.
Please read this information
sheet carefully and discuss it
with others if that would be
helpful. Please ask us if there
is anything that is not clear or
you would like more
information. Take time to
decide whether you wish to
take part.
1. What does it involve and do we have do take part?
This study involves interviews with
families about their views on
donating tissues for childhood
cancer research. You have been
asked to take part as you have had
a child with cancer. We would like
to speak to families who have been
asked if they would donate tissues
as well as families who have not
been asked. We would like to
interview one or more parents/
carers in each family. If your child
is over the age of 8, we would like
to interview your child as well, as
long as you are happy with this.
You do not have to take part in this
2.You don’t have to take part
study—it’s up to you. If you decide not to take part, you don’t have to give any reason and the care
of your child will not be affected in any way.
You do not have to decide whether to take part now. Your doctor will ask if your contact details
(name, address and telephone number) may be passed to a researcher, who is called Debbie Kirk. If
you say no, that’s fine and you don’t need to give any reason.
If you say yes, Debbie will get in touch with you and make sure you understand what is involved.
Then she will wait about a week before getting in touch with you to see what you have decided. If
you decide not to take part at this stage, that’s fine, and you don’t need to give any reason. Debbie
will delete your contact details. If you say yes, she will arrange to interview you (parents/carers of
your child) and your child if the child is a suitable age and would like to take part. We will not tell
any of the hospital staff involved in caring for your child what you decide.
3.The interviews
If you agree to your contact details being
Interviews will involve questions about donating tissues
passed on, Debbie will get in touch. If you
for childhood cancer research
would like to take to part, Debbie will arrange
to interview you at a time and place that is
convenient for you. Usually interviews will take place in family homes, but if you prefer somewhere
else—for example the hospital– this will be arranged.
When Debbie arrives for the interview, she will check that you have read this leaflet, explain the
study again, and ask you to sign a form to say that you understand what is involved and that you
agree to it. However you can decide to pull out of the study at any time. You do not have to give a
reason.
If you child is over 8, we will ask if you and your child
would like to be interviewed. It’s up to you whether your
child is interviewed as well as yourself.
There is a separate leaflet for children and for
teenagers which we would ask your child to read before
deciding whether to take part.
Children may choose whether to be interviewed on their
own or with their parents there. We know that particular
sensitivities can arise in such interviews. We have
experience of similar research which will help us. We will
also ask you to advise us on the best way to talk to your
child. You may wish to know that Debbie Kirk, the
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Debbie Kirk
Study of family and staff views of tissue donations for childhood cancer
research
4. Interviews will be confidential
interviewer, has undergone a Criminal Records Bureau check.
Interviews can be as long or as short as you like, but probably no more than
45 minutes for parents and no more than half an hour for children. Debbie
will ask you for your views on issues concerning tissue donation.
Debbie will ask you if you will agree to the interviews being tape-recorded. The
tapes will be marked with a number only: no names will appear anywhere. These
interviews are then transcribed (written down) but any details such as names
will be changed to make sure nobody can identify you from what you say. The
interviews are then analysed by the study team. If we report quotations we
always change details such as names and places to make sure nobody can be
identified.
5. Risks and benefits of taking part
Many people enjoy taking part in this sort of study, as if
gives them an opportunity to talk and reflect on things. We
do not anticipate any major risks, though sometimes people
can become upset during interviews. All interviews will be
handled with tact and sensitivity.
If you are harmed by taking part in this research
project, there are no special compensation
arrangements. If you are harmed due to someone’s
negligence, then you may have grounds for a legal
action but you may have to pay for it. Regardless of
this, if you wish to complain, or have any concerns
about any aspect of the way you have been
approached or treated during the course of this
study, the normal National Health Service
complaints mechanisms should be available to you.
For further information
For further information or to discuss the study,
please contact any member of the study team, listed
overleaf,This study is funded by the Economic and
Social Research Council (ESRC). www.esrc.ac.uk
You will be given this information sheet and a copy
of the signed consent form to keep.
Page 3
Department of Health
Sciences
University of Leicester
22-28 Princess Road West
Phone: 0116 2523204
Fax: 0116 2523272
Email: [email protected]
STUDY TEAM
Please feel free to contact any of us:
Lead investigator: Dr Mary Dixon-W
oods
Senior Lecturer in Social Science and
Health
Department of Health Sciences
University of Leicester
Project website: http://
www.hs.le.ac.uk/research/
themes/projects/cctd/
22-28 Princess Road West
Leicester LE1 6TP
Tel: 0116 2523204 Fax: 0116 252
3272
The findings of this study will be
published as a report to the ESRC,
in professional journals and on the
project website, and will be fed
back to the National Association
of Children’s Cancer Parents’
Organisations, and the NHS
Research Ethics Committee that
considers UKCCSG and other
children’s studies.
Email: [email protected] Project web
site: http://
www.hs.le.ac.uk/research/themes/p
rojects/cctd/
Professor Kathy Pritchard-Jones
Senior Lecturer & Honorary Consultant in Paediatric Oncology
Institute of Cancer Research & Royal Marsden Hospital,
Brookes Lawley Buildling,
15 Cotswold Road,
Sutton,
Surrey SM2 5NG
Tel: 020 8661 3452 (020 8661 3498 - PA Regan Barfoot)
Fax: 020 8661 3617
Email: [email protected]
Dr David Heney ,
Senior Lecturer in Paediatric Oncology and Medical Education
Children’s Hospital,
Leicester Royal Infirmary
Leicester LE1 5WW
Tel: 0116 2525098
Email: [email protected]
Dr Jo Forster
Clinical Fellow in Paediatrics
Children’s Hospital
Leicester Royal Infirmary
Leicester LE1 5WW
Tel: 0116 2525475
Email: [email protected]
Dr Bridget Young
Senior Lecturer in Psychology
Department of Clinical Psychology
University of Liverpool
Whelan Building
Liverpool L69 3GB
Tel: 0151 7945529
Email: [email protected]
Ms Debbie Kirk
Research Associate
Department of Health Sciences
University of Leicester
22-28 Princess Road West
Leicester LE1 6TP
Tel: 0116 2525475
Fax: 0116 2523272
Email: [email protected]
Dr Martin Tobin
MRC Research Fellow
Department of Health Sciences
University of Leicester
22-28 Princess Road West
Leicester LE1 6TP
Tel: 0116 2523248
Fax: 0116 252372
Email: [email protected]