In the Hospital - a quick look

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For some parents of preemie babies, the neonatal intensive care unit (NICU for short) becomes a home away from home while they wait for their preemie baby to get strong enough to leave.


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The NICU is where your preemie baby will get lots of help.

It can be noisy, confronting, and stressful. Learning a little about the equipment, what health professionals are doing, and some of the medical jargon can help parents of preemie babies feel more confident and less overwhelmed.
Preemie help is here to make sense of it all.

 


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There are many research groups around the world that are investigating all sorts of issues related to preterm birth, trying to improve the quality of care and outcomes for babies following their early arrival.

While you are in the NICU you may be approached by a research nurse or another member of staff asking you and your preemie baby to be involved in a research project. There are many reasons people may or may not want to be involved but following are a few points you may wish to consider. Remember you shouldn’t feel obligated to join the research and ask as many questions you like before you sign up.

Benefits to me and/or my preemie

The motivation to participate in a study varies from person to person. Some people are keen to participate in an intervention or treatment study that might have short or long term benefits, such as learning or physical health benefits.

Some research study participants really enjoy the fact that their preemie baby’s health is so closely monitored by health professionals while they are involved in the study. Being involved in research sometimes means you have access to the most recent and advanced treatment plans and information for no direct costs to you. Others may get involved simply because they are curious and interested in helping improve approaches to the health care of preterm infants and children.

Participation in research is always voluntary and if you are considering participating in a research study you should discuss the possible benefits and potential risks of the study before signing up.

Why is research important?

There are not always obvious and direct benefits for people who participate in research but research is important for a number of reasons, these include;

  • To evaluate the effectiveness of interventions or treatment programs
  • Find out the short and long-term effects of being born too early or too small

The information from these studies is then published or presented at conferences to give health professionals more knowledge and the tools to develop strategies to overcome difficulties and try to prevent preterm birth for mothers.

What’s involved?

What’s involved in any particular research project will depend on what the researchers are trying to find out or evaluate but you may be asked to complete questionnaires, give medical data, your child may be followed up for physical assessments or assessments about any number of different skills, such as motor skills or visual processing, or you may be asked to attend treatment sessions.

When you sign-up for a research project you will be given information about what is involved for your specific project. Researchers have to get what is called “Informed Consent”, which will give you all the relevant information for your project what is involved, the possible risks of involvement, alternatives to involvement, and you privacy and confidentiality as a research participant. Before agreeing to participate in a study you will be asked to read and sign the consent form. Usually all this information is provided in what is called a Plain Language Statement. There will be a contact number for you to call should you have any questions, don’t be shy to ask questions if you are unsure or confused.

Can I choose which research project?

Depending on where you are you may not have choice of research projects but if you do choosing a research program may depend on several things, such as your availability, what are the current projects, the inclusion criteria and recruitment procedures, and what is involved in the study.

 

 



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Preemiehelp.com is here to provide preemie information, community and solutions to the people that need it most... you!
Preemie Help is also looking to provide a resource for any professionals that have contact with preterm babies and children in order to help them best understand the challenges that face a preemie. Get in contact to help us impact preemies.

Preemie, Premmie, or Prem?

Most babies spend between 38 and 42 weeks in their mother’s uterus. So, technically a preterm birth, preemie, premmie, or prem, is an infant who is born less than 37 completed gestational weeks. 


Read More: Defining Preterm birth


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