The purpose of this research study is to develop a consensus conceptual definition of neonatal serious illness. You are being asked to take part in a research study because you have expertise in either neonatology, pediatric palliative care, or both and/or because you are the parent of a child who was previously in the Neonatal Intensive Care Unit.
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.
If you agree to take part in this research, you will be asked to complete two surveys relating to defining neonatal serious illness. Your participation in this study will take about 15 minutes total. You will be asked to complete an initial survey, which is expected to take no more than 10 minutes to complete. You will also be asked to complete a follow-up survey, approximately 1-month later, which is expected to take no more than 5 minutes. We expect that no more than 305 people will take part in this research study.
You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey 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:
· Discomfort answering survey questions. You are under no obligation to complete any questions that make you uncomfortable
The possible benefits to you for taking part in this research are:
· Improve knowledge regarding how experts define neonatal serious illness.
To protect your identity as a research subject, No identifiable information will be collected other than your email address, the research data will not be stored with your name or any other identifiable information, the researcher(s) 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 212-241-6186. You can also call the Program for the Protection of Human Subjects Office at 212-824-8200.
