INDIANA UNIVERSITY INFORMED CONSENT STATEMENT FOR RESEARCH
Developing and Validating a Caregiver Experience Scale
ABOUT THIS RESEARCH
You are being asked to participate in a research study. Scientists do research to answer important questions which might help change or improve the way we do things in the future.
This consent form will give you information about the study to help you decide whether you want to participate. Please read this form, and ask any questions you have, before agreeing to be in the study.
TAKING PART IN THIS STUDY IS VOLUNTARY
You may choose not to take part in the study or may choose to leave the study at any time. Deciding not to participate, or deciding to leave the study later, will not result in any penalty or loss of benefits to which you are entitled.
WHY IS THIS STUDY BEING DONE?
The purpose of this study is to develop and validate a new Caregiver Experience Scale. Many
Questionnaires about caregiving have been developed in the past, but they mainly focus on caregiver burnout. We mean to develop a questionnaire that assesses the caregiver experience as a whole.
You were selected as a possible participant because you have self-identified as a caregiver.
The study is being conducted by Ann Cottingham, MAR, MA Director of Research in Health Professions Practice and Education with the IU Center for Health Services and Outcomes Research and Regenstrief Center for Health Services Research and Rachel Gruber, MSIO, CCRP with Regenstrief Institute. This study is funded by Indiana University Health Values Fund.
HOW MANY PEOPLE WILL TAKE PART?
If you agree to participate, you will be one of up to 1000 people taking part in this study.
WHAT WILL HAPPEN DURING THE STUDY?
If you agree to be in the study, you will do the following things:
Complete a one-time online survey. The survey is expected to take between 15 and 25 minutes.
WHAT ARE THE RISKS OF TAKING PART IN THE STUDY?
A risk of completing the survey is being uncomfortable answering the survey questions.
While completing the survey, you may skip any question that you do not want to answer.
WHAT ARE THE POTENTIAL BENEFITS OF TAKING PART IN THE STUDY?
We don't expect you to receive any benefit from taking part in this study, but we hope to learn things that will help caregivers and scientists working to better understand caregiving in the future.
HOW WILL MY INFORMATION BE PROTECTED?
Efforts will be made to keep your personal information confidential. We cannot guarantee absolute confidentiality. The online host for this survey is REDCap. There is a minimal risk that security of any online data may be breached, but because the online host (REDCap) uses several forms of encryption, it is unlikely that a security breach of online data will happen. The only identifiable information we are collecting is your email, which is an optional field. We are only collecting your email to administer the gift card that you might win for your participation. After we have administered the gift cards we will delete the email field, and no longer have identifiable information. Your personal information may be disclosed if required by law. No information that could identify you will be shared in publications about this study.
Organizations that may inspect and/or copy your research records for quality assurance and data analysis include groups such as the study investigator and his/her research associates, the Indiana University Institutional Review Board or its designees, and (as allowed by law) state or federal agencies, specifically the Office for Human Research Protections (OHRP) who may need to access the research records.
WILL I BE PAID FOR PARTICIPATION?
At the end of the questionnaire there will be a place to enter your email address to be put in the drawing to win one of 6 $25 gift cards.
WILL IT COST ME ANYTHING TO PARTICIPATE?
There is no cost to you for taking part in this study.
WHO SHOULD I CALL WITH QUESTIONS OR PROBLEMS?
For questions about the study, contact the researcher, Ann Cottingham at ancottin@iu.edu or Rachel Gruber at gruberra@iu.edu. After business hours, please call Rachel Gruber at 317-274-9321.
In the event of an emergency, you may contact Rachel Gruber at 317-274-9321.
For questions about your rights as a research participant, to discuss problems, complaints, or concerns about a research study, or to obtain information or to offer input, please contact the IU Human Subjects Office at 800-696-2949 or at irb@iu.edu.
CAN I WITHDRAW FROM THE STUDY?
If you decide to participate in this study, you can change your mind and decide to leave the study at any time in the future. If you decide to withdraw, please just close out of the survey.