The purpose of this research study is to gather opinions through focus groups in order to develop: (1) a care-navigation/peer mentoring program for women with spinal cord injuries (SCI), and (2) develop disability sensitivity and awareness/clinical skill training for women’s healthcare providers. In collaboration with women with SCI and healthcare providers, we will then use this information to pilot two programs within Manhattan to see if this program is worth doing and can be expanded to other hospitals within the United States. You are being asked to take part in a research study because you are either a woman with an SCI or a healthcare provider who serve 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.
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 including a short questionnaire. We expect that 32 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 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.
To protect your identity as a research subject, we will only collect information from you by focus group interview or online survey. The information you tell us will not be linked to your name. The information will only be identified by a study ID number. Researchers will not share your information with anyone. In any publication about this research, your name or other private information will not be used.
If you have any questions about this research, please contact the Researcher at Vincent.Huang@mountsinai.org. You can also call the Program for the Protection of Human Subjects Office at (212) 824-8200.