The purpose of this research study is to determine the top 3-5 healthcare topics of importance to women with spinal cord injury (SCI). We will then use this information to develop a web-based resource addressing those topics in collaboration with women with SCI, caregivers, and healthcare providers. The primary focus is on providing a clearinghouse/directory of links to consumer-based information, education, and resources (e.g., videos, downloadable books). You are being asked to take part in a research study because you are a woman and you have an SCI or are a caregiver or healthcare provider who serves women with SCI.
Being in a research study is completely voluntary. You can choose not to be in this research study. You can also say yes now, and change your mind later. Deciding not to be in the research study, now or later, will not affect your ability to receive medical care at Mount Sinai Medical Center/TIRR Memorial Hermann (or where ever you may receive your care).
If you agree to take part in this research, you will be asked to complete one (1) questionnaire and participate in a focus group by computer or phone. Your participation in this study will take about 1-2 hours for the focus group meeting and will include a 5-minute questionnaire. We expect that 100 people will take part in this research study.
You can choose not to answer any asked or written questions you do not wish to answer. You can also choose to stop taking the survey or not participate in the focus group at any time. You must be at least 18 years old to participate. If you are younger than 18 years old, please stop now.
The possible benefits to you for taking part in this research are:
- Increased knowledge and awareness of healthcare concerns for women with SCI. However, you may receive no direct benefit from participating.
The possible risks to you in taking part in this research are:
- You may have some minor stress or discomfort from participating in the focus group, but you will be able to skip (or not respond to) any question you would prefer not to answer.
- Breach of confidentiality. While we will not use your name or personal information in any presentations/ publications, we cannot control what other group attendees share outside the focus group. All attendees will be asked to keep information discussed within the group private though.
The project is led by:
Heather Taylor (PI – TIRR/UTHealth); Stephanie Kolakowsky-Hayner (Site PI – Mount Sinai); Susan Robinson-Whelen (Co-I – TIRR/Baylor COM)Interested in Participating? Please Sign Up Here: http://bit.ly/womenSCIstudy