Have you ever wanted to give back after your NICU experience?
We have yet another opportunity for you to share your NICU experiences and perspectives.
The Preemie Parent Alliance actively seeks ways to collaborate with clinicians and researchers to ensure the NICU parent perspective is appropriately represented in all facets of healthcare policy, care guidelines, advocacy, education, and family support. We embrace these relationships and are pleased to offer these opportunities to our NICU parent community.
Message from Shannon Adams:
Thank you for considering participating in this research study.
Who is doing the study?
My name is Shannon Adams. I am a medical student at The Warren Alpert Medical School of Brown University
Phone: (410) 979-6214
Email: shannon_adams@brown.edu
Why am I doing this study? I am conducting this survey as part of a research project to get a better sense of how their experiences have shaped their understanding of the quality of life for NICU babies. Our hope is that determining familial beliefs, and the extent to which these beliefs differ from providers, may help to augment the efficiency of that relationship.
Why were you asked to participate? You were invited to participate because your baby was born preterm, which means they were born early (less than 36 weeks 6 days gestation).
Will my participation be anonymous? Yes, all your answers and information will be kept confidential.
What is being studied? Our goal is to better understand the NICU parent voice as it relates to the care of their own children. Quality of life as a clinical tool in the NICU is a very difficult subject and the best way to understand how health care teams should deal with individual patients that require these kinds of conversations is to see where parents stand.
What are the benefits of participating in this study? We hope that your answers will help us understand your needs so that we can help other parents with premature infants in the future.
Are there any risks to participating in this study? Some of the questions may make you feel uncomfortable. You can skip any question you would rather not answer. During the study, you will be asked to think about and talk about things that may have been traumatic experiences. This may lead to what is called secondary trauma. You can ask for help to cope with these feelings. You can leave the study at any time.
How long will it take? Your participation in this study should take approximately 10 minutes.
Will I be paid to participate? No. You will not be paid for being in this study.
You do not have to be in this study if you do not want to. If you choose to participate in this study, you have rights. These include:
- The right to have all of your questions answered before, during, and after the study.
- The right that your information will be kept confidential.
- The right to choose whether or not to answer a question.
- The right that your answers will be kept confidential.
- The right to change your mind about participating in the study.
- The right to stop participating in the study.
If you have further questions about this project, your rights as a research participant or would like to receive a copy of the paper that will ultimately be published after the study is complete, or if you have a research-related problem, please contact me.
Shannon Adams
(410) 979-6214