You are invited to take part in a project to test the effectiveness of a resource, the COPD Caregiver's Toolkit ("the Toolkit"), in improving the quality of life for informal caregivers of patients living with COPD. Below is important information about the project and what your participation will require.
What is the reason for doing this project?
The purpose of the project is to help Respiratory Health Association determine if the Toolkit helps to improve the quality of life of caregivers by reducing the burden that accompanies informal caregivers for people living with COPD.
How many people will take part in this survey?
We hope to survey approximately 200 informal caregivers of patients living with COPD.
What will you do if you choose to be in this project?
If you choose to participate in this project, you will be given a Toolkit to use for one year. Project staff will follow up with you every few months on how you have used it, which parts have been most helpful, and if it has helped you in your role as a COPD caregiver. You will also be asked to take a brief survey at the beginning and end of the project about your role, feelings, and experiences as a caregiver. We will only collect and use your identifying information to allow us to contact you about the survey. No information that identifies you will be associated with the results of this project.
Will being in this project help me in any way?
Your participation will help determine the effectiveness of the Toolkit in reducing the burden of informal caregiving. As a participant, you will get a free copy of the Toolkit, which you can keep after the project ends.
Are there any financial costs or compensation payment for participating in the survey?
There will be no costs or financial compensation for participating in the survey.
If I have questions or concerns about this project, whom can I call?
You can call us with your questions or concerns. Please contact Respiratory Health Association's COPD Team at COPDToolkit@resphealth.org, or at 312-229-6186 with any questions.
Confidentiality and Privacy Statement
Any identifying information collected will not be linked to your survey responses, and your responses to the survey will not change or influence your rights as a participant.
What are my rights as a participant?
If you choose to participate in this project, you have the right to be treated with respect, including respect for your decision whether or not to answer any particular question and whether or not you wish to continue or stop participating in the project. You are free to choose to stop the project at any time. Choosing not to be in this project or to stop participating in the project will not result in any penalty to you or loss of benefit to which you are entitled.