C. Informed Consent Agreement
VIDEOTAPED
DEMONSTRATION/STATEMENT
Information
Sheet
You are being asked to
volunteer to participate in a research study. Before you give your consent to participate, it is important
for you to read the following information, and ask as many questions as necessary
to be sure you understand what it is you will be asked to do.
Who
is doing the research?
Mary
Ennis, CCD Health Reform Committee and Laurie Beachell, National Coordinator of
the Council of Canadians with Disabilities (CCD) and Kari Krogh of the School
of Disability Studies, Ryerson University. CCD is being funded by Human
Resources Development Canada to undertake this review from a disability
consumer perspective of home support policies and practices across Canada. Supplementary resources are being
provided by the Social Sciences and Humanities Research Council and the
Canadian Institutes of Health Research through our association with Dr. Kari
Krogh.
What is the project about?
This project is designed to
collect information about home support policies and their impacts on people
with long-term impairments. The
information collected and resulting analysis will emphasize the perspectives of
people with disabilities.
How is Home Support
defined in the project?
Home support as we define it
is personal support that is provided to people in home and community settings
to enable people to participate in society. It is not medical services such as physiotherapy. Some regions call it Home Care or
Attendant Care.
What are the objectives
of the study?
What are the project
outcomes?
Four project outcomes will
result:
Ø
a national database of
home support policies including information from province/territory;
Ø
a multi-media report of
the central issues;
Ø
a set of home support
policy recommendations; and
Ø
a set of recommendations
for increasing consumer participation in policy making.
What kinds of
activities are taking place as part of the study?
Research participants may be
asked to be involved in interviews, focus groups, on-line discussions or
videotaped demonstrations of issues.
Each of the sites will have a regional coordinator to support
participants. All of these
activities will take place within a 14- month period February 2003 - March
2004.
What will I be asked to
do if I consent to participate in the study?
You will be asked to
demonstrate and talk about how home support services and policies impact upon
your life. You may want to have
meaningful locations included in your video clip, such as a library where you
volunteer, a place of work, or the inside of your home where you
socialize. You could also speak
directly into the camera about your ideas. The clip should be 15-30 minutes long. You do not have to
edit the tape yourself but you will likely be consulted about editing that will
take place elsewhere.
A digital video camera must
be used and the regional and project coordinators will be able to assist you
with technical matters. You will
be asked to submit the digital videotape and make a VHS format tape to keep and
review.
Please try to omit anything
potentially sensitive such as the address of your home. Once the video clip is submitted, it
will be reviewed and suggestions may be made to omit potentially sensitive
information before it is shared publicly.
The principal investigator or the research team reserves the right to
omit such information.
Are there guidelines
for the videotape?
Yes, videotape clips should:
1. Illustrate some
aspect of one of the “hot topics” explored in this study. (The regional coordinator will discuss
the topic that you should work to illustrate.)
2. Make use of the
medium and show physical space, movement, social interaction, voice intonation
etc. and ideally be more than just a ‘talking head on the screen.’
3. Should allow the
general public to see an aspect of the lives of people with disabilities that
might otherwise remain hidden from view.
4. Be a personal story,
a commentary or analysis on home support policy from the perspective of a
person with a disability.
What information will
be collected?
The information as described
above will be collected on digital videotape. Notes will be taken when you are consulted about your ideas
related to editing.
What will the
information be used for?
The information will be used
to meet the project objectives (as stated above) and may be distributed through
community forums, policy reports, conferences and academic publications. The
information gathered and the reports generated will be used by the CCD Health
Reform Committee and Kari Krogh to educate people who are in decision-making
positions regarding home support for people with disabilities. Participants are free to participate in
the public sharing of the study’s final reports.
In particular, the video
clips will be edited and considered for inclusion within a multi-media
report. Some segments of clips may
be posted to the project website to facilitate national discussions of the
topics that you raise. You will
not retain copyright of this clip, rather CCD and Kari Krogh will be free to
use it in research analysis and information sharing activities. The data,
without identifying information that could be used to identify you personally,
may be used for future research purposes.
Are there Incentives to
Participate?
You will be provided with an
honorarium of $75 for submitting the videotape and an additional $75 if the
tape is used in the multi-media report.
Will Costs Related to
Participation be Covered?
Yes, you will be provided
with resources to cover the cost of a video camera rental, an assistant and
incidental expenses such as parking to a maximum of $250. If you require accommodations due to
disability, please contact the regional or project coordinator. We will make
every effort to put these supports in place for you.
What are the benefits
of participating in this study?
The CCD Health Reform Committee
will benefit from having the knowledge generated from this study. You may appreciate an opportunity to
work alongside others who are also sharing experiences, analyzing policies and
proposing solutions. Personal
benefits cannot be guaranteed. All participants will be given the opportunity
to have access to the general results of the study in an accessible format once
they become available.
What steps will be
taken to keep information confidential and anonymous?
Anonymity means that no
uniquely identifying information is attached to the data and thus no one, not
even the researcher, can trace the data back to the individual providing
it. Within this study, we will not be able to provide
anonymity; the principal researcher will be able to trace information to its
original source.
Confidentiality means that
the privacy of individuals will be protected in that the data they provide will
be handled and reported in such as way that it cannot be associated with them
personally. Several steps will be taken to protect confidentiality
however it is critical that the individuals participating in the creation of a
video demonstration understand that confidentiality cannot be guaranteed. When information is collected from you, your real name
will be immediately replaced by a pseudonym. A record of real names and pseudonyms as well as the
informed consent forms will be kept in locked files in the principal
researcher’s office. Only
professional transcribers who are unfamiliar with the disability community will
be hired. Transcribers, regional
coordinators and any other research personnel will be asked to sign a
confidentiality agreement. The
researcher may be required to modify identifying information to protect the
identity of the participant when reports are being prepared. The project coordinators for this
project will receive training in matters related to confidentiality, anonymity
and informed consent.
Your choice: Three levels
of confidentiality
Some participants will choose
to have steps taken to protect their confidentiality throughout the
project. Other participants may
wish to have their names affiliated with the final report in the
acknowledgement section or even with specific pieces of data such as a quotation. We recommend that you wait until you
have a chance to review the draft reports before providing consent to have your
name used. You will be asked to
sign a separate consent form if you wish to have your name used publicly. The principal researcher or the
research team reserves the right to not use real names in association with
specific data if it appears to not be in the best interest of the project, CCD,
Ryerson, the individual or any other participant involved in the study.
We are required by law to
inform the appropriate authorities of any behaviours that might be injurious to
the participants, or cause reasonable suspicion that a child, elder, or
dependent adult has been abused.
Research information is not privileged and is thereby subject to
subpoena.
What are the risks of
participating in this study?
There are several possible
risks associated with your participation.
Although steps will be taken to protect your identify to some degree,
you should not agree to submit a videotape unless you are comfortable with your
ideas and images being made public in associate with your name. We cannot guarantee confidentiality
given that videotape is being used to collect information. Some people accessing the multi-media
report will be able to identify you even if we use a made-up name. Another risk is that discussing certain
topics could become upsetting to you.
If you feel uncomfortable at any time, you may choose to discontinue
participation, either temporarily or permanently.
Can I stop
participating?
Yes, you can choose not to participate or you can
choose to stop participating either temporarily or permanently. Any decision you make regarding
participation will have no unfavourable consequences and will not affect your
relationship with CCD, CCD member disability organizations or Ryerson
University.
Who can I contact if I have questions?
|
Project Coordinator/Health Reform Committee |
Principal Investigator |
|
Maureen Colgan, Project
Coordinator or Mary Ennis, Health Reform
Committee Council of Canadians with
Disabilities 926-294 Portage Avenue Winnipeg, Manitoba R3C 0B9 Tel: 204-947-0303 or 1 866 947-0303 (toll
free) Fax 204 942-4625 |
Kari Krogh, Ph.D. School of Disability
Studies Ryerson University 350 Victoria Street Toronto, Ontario Canada M5B 2K3 416 979 5000 ext. 7909 416 979-5209 (fax) |
If you have questions
regarding your rights as a research participant in this study, you may contact
the Ryerson University Research Ethics Board for information:
Research Ethics Board
C/o Office of Research
Services
Ryerson University
350 Victoria Street
Toronto, ON M5B 2K3
(416) 979-5042
What should I do if I want to participate in
this study?
Please sign the consent form below if you wish to
participate in the study. Submit
this consent form to the regional coordinator or the principal researcher. You will be provided with a copy to
keep.
________________________________________________
Informed Consent Form
My signature below indicates that I have read the
“Information Sheet” above in this agreement and that I have had a chance to ask any questions I
might have about the study. I understand the benefits and risks to myself. I understand that my identity cannot
remain hidden. I have been told
that by signing this consent agreement I am not giving up any of my legal
rights and that I may withdraw at any time. I also understand that I will be
given a copy of this signed agreement to keep.
1. Participant Signature
Name of Participant (please print):
____________________________________________________
Signature of Participant:
____________________________________________________________
Date:
___________________________________________________________________________
Contact Information for Participant
Address:
_________________________________________________________________________
Phone:
___________________________________________________________________________
Email: ___________________________________________________________________________
2. Regional Coordinator (collecting this form)
Regional Coordinator (please print):
____________________________________________________
Signature of Regional Coordinator:
_____________________________________________________
Date:
_____________________________________________________________________________
3. Principal Investigator
Name of Principal Investigator (please
print):
_____________________________________________
Signature of Principal Investigator:
_____________________________________________________
Date:
_____________________________________________________________________________