Survey Study Introduction and Agreement to Participate

You are being invited to take part in a research study. To ensure that you are aware of the benefits and potential risks involved in participating, and to make it clear that participation is completely voluntary, this introduction contains essential information about your informed consent in the study’s participation. Your decision on whether you participate or not in this survey study will have no effect on your relationship with Brain Injury Association of America (BIAA) and will not change the medical care of the person with an acquired brain injury (ABI) who is under your care.

The purpose of this research study is to develop a questionnaire to measure positive coping (“posttraumatic growth”) in family caregivers of individuals living with an acquired brain injury (ABI).

Although most caregiving studies focus on the strain experienced by the caregiving family of an individual with an ABI, the focus on positive outcomes that may result from this experience could be quite important and potentially help individuals with an ABI and their families improve their quality of life and reduce the psychosocial burden of a brain injury.

We are asking you to take part in this research study because you are: 1) a family caregiver of an individual with an acquired brain injury and have been looking after the person with ABI for at least one year, and 2) you are between 22 to 75 years old, and 3) do not have a diagnosis of a brain injury. Your participation is voluntary which means you can choose whether or not you want to take part in this study.

This research is being conducted at New York University School of Medicine (NYUSOM) with Dr. Sonya Kim as Principal Investigator and is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) under the Switzer Research Fellowships Program Grant.

Participation involves completion of one questionnaire; it should only take < 20 minutes, and your responses are completely anonymous; that is, no personally identifiable information will be collected and none of your responses can be linked to you nor your family member with an ABI. Completing the survey is an indication that you have consented to be in the study.

You may not benefit personally from being in this study. However, we hope that, in the future, other people might benefit from this study and it helps reduce the adversity the caregiving family face and improve the adjustment of the person with the ABI, the care recipient. The risk posed to participants is no more than minimal. Here is a list of potential risks associated with this research:

1. Whenever data about a person is entered into a research database, there is some risk to confidentiality. 2. Though the theme of this study is about posttraumatic growth and benefit finding, you could experience frustration or temporary distress as you complete the survey, as some questions may be of a sensitive nature, and you may therefore become upset as a result. 3. In addition, there may be some inconvenience, because participation will involve extra time to complete this survey.

You can skip questions you do not want to answer and you can stop answering questions any time and decide to not participate further.

If you have any questions about the survey, please call Dr. Sonya Kim at 212-263-4849 or email us at mailto:Sonya.Kim@nyumc.org. If you have questions or concerns about your rights as a research participant, you may contact Institutional Review Board at NYU SOM: 212-263-4110.

WELCOME TO THE STUDY ON POSITIVE COPING IN THE CAREGIVING FAMILY OF
PERSONS WITH ACQUIRED BRAIN INJURY


YOUR RESPONSES AND TIME ARE VERY APPRECIATED
~Thank you~

NYU School of Medicine Research team

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