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DIFFICULT DECISIONS ABOUT CANCER: FAMILY PERCEPTIONS
You, as part of your family, are invited to participate in a family discussion of difficult decisions about cancer. This is part of a study by the Cancer Council Australia and The University of Adelaide to learn more about decisions that are difficult for families of people diagnosed with cancer. We specifically want to talk to families and patients who have completed their treatment of cancer.
In this family discussion, we invite you as a family to talk about your experiences of dealing with any difficult decisions that you faced following a cancer diagnosis. What you talk about is completely up to you Ώ it might be about deciding what to do, when to do it, or who to involve, whether that was during treatment, or when it was all finished. We will ask a couple of questions to get the conversation started, but there is no right or wrong answer to these questions Ώ we simply want to know how you, as a family, were affected by and dealt with difficult decisions. We are also interested in things like, what made decisions hard, and what helped you all to work through the difficulties you faced together.
If
you agree to be part of this study, an experienced researcher, Dr Jaklin
Eliott, from the Cancer Council Australia and The University of Adelaide, will
talk with you along with members of your family about your experiences. This
could happen either at a family home, or within The University of Adelaide
(whichever was most convenient for you and your family). We expect that each
discussion would take between an hour and an hour-and-a-half, but you can choose
to stop it, or leave, whenever you want to. If you do agree to participate, you
can change your mind at any time without giving a reason it is completely up
to you.
Before
we begin the discussion with you and other members of your family, we will ask
you to sign a consent form (a copy of this is available here, but we will have
copies for you to sign before we start talking). We will video and audio-record
and then transcribe the discussion. This is so we can make sure that we
accurately record how your family felt about and dealt with difficult decisions,
and so we can look at it in more detail later. Only people directly involved in
the research will be able to access the videos, the audio-recordings, or
transcriptions. All videos will be destroyed once we have finished analysis. In
addition, all information in the discussion will be confidential, and we will
change any identifying information (such as names or places), so that you and
your family will not be personally identified as having contributed to the
project. We will keep the information associated with this project securely
stored at The University of Adelaide.
Based
on these discussions, Dr Jaklin Eliott will prepare a report for the Cancer
Council Australia and The University of Adelaide. We hope to be able to point
out ways that healthcare professionals and organisations can better support
families following a cancer diagnosis. There may also be an option to present
these results in an academic journal or at a conference (but you and your
family will not be personally identified in any way in these presentations). It
would not involve any financial gain for us.
If,
after the family discussion, you or any member of your family has any questions
or issues arising out of the discussion, you are welcome to call Dr Eliott
(contact numbers below) for answers or suggestions on who to contact for
assistance. Alternatively, you could call the Cancer Council Helpline on 13 11
20.
If
you require any further information about this project, you may contact the
principal investigator, Dr Jaklin Eliott: Phone: (work) 8303 3855; (mobile)
0413 565 637. If you have any questions about the ethical nature of this study,
you may contact the Human Research Ethics Committee at the University of
Adelaide on 8303 6028.
THE UNIVERSITY OF ADELAIDE
HUMAN RESEARCH ETHICS COMMITTEE
DIFFICULT DECISIONS ABOUT CANCER: FAMILY PERCEPTIONS
1. I,
(please print name)
consent
to take part in the research project entitled:
Difficult decisions about cancer: Family
perceptions
2. I
acknowledge that I have read the attached Information Sheet entitled:
Participant Information Sheet: Difficult
decisions about cancer: family perceptions
3. I have had the project, so far as it
affects me, fully explained to my satisfaction by the research worker. My consent is given freely.
4. Although I understand that the purpose of
this research project is to improve the quality of care and information
available for families of patients with cancer, it has also been explained that
my involvement may not be of any benefit to me.
5. I have been given the opportunity to have
a member of my family or a friend present while the project was explained to
me.
6. I understand that I will be taking part
in an interview with other family members, and that this will be video and
audio-recorded, then transcribed for later analysis.
7. I have been informed that, while
information gained during the study may be published, I will not be identified
and my personal results will not be divulged.
8. I understand that I am free to withdraw
from the project at any time.
9. I am aware that I should retain a copy of
this Consent Form, when completed, and the attached Information Sheet.
...
(signature) (date)
WITNESS
I have described to
.. (name of
participant)
......... the nature of the
research to be carried out. In my
opinion she/he understood the explanation.
......... Status in Project: Project
Investigator
.
......... Name: Jaklin A.
Eliott
... (signature/date)