Active Research Surveys
SUPPORT
Are you the parent or carer of a miracle baby? Listed below are active research surveys that need your voice!
Research happens in NICUs across Australia, and around the world. Every trial that takes place within Australian NICUs has gone through very strict protocols and guidelines, has had input by NICU parents and has undergone independent ethics approvals.
Your experience, story and journey with your miracle baby or babies is valued. By completing any of the surveys below, you are assisting researchers on the joint mission of advancing health and outcomes for babies born early or sick.
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If you are a researcher, click here to submit a survey
Active Research Surveys:
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They are looking for:
- Parents of babies diagnosed with high pressure in their lungs, pulmonary hypertension, at any point whilst under neonatal care.
Your views are extremely important
To ensure that future studies looking at treatments for pulmonary hypertension in babies include outcomes that are agreeable to families.
What is involved?
Completion of an online survey which takes place over two or three rounds.
Parental experience of their baby having Inguinal Hernia Surgery
Inguinal hernia surgery is one of the most common electively performed surgeries in infants. Infants requiring this surgery have frequently been born extremely premature with consequent underlying chronic lung disease (CLD).
The specific aim of the parental survey is to start consumer engagement on what matters to parents of babies who have undergone inguinal hernia surgery. The Women & Children's Health Network are planning on designing a large trial on what clinicians think are important outcomes regarding neonates, but they are wanting to ensure that the trial is also looking at outcomes that matter to parents.
Did your baby have an inguinal hernia repair between 2021-2023?
To enter the research survey, please click this link:
Humidity in extremely premature infants - clinical trial consumer survey
Extremely preterm babies lose water through their immature skin. This causes dehydration and high blood sodium concentrations (hypernatraemia), which has been linked with lower survival, brain damage, and disability in childhood.
Water loss through the skin can be improved by increasing incubator humidity. But there is worldwide variation in practice due to lack of clinical trials.
Doctors and nurses in Japan routinely use 95% incubator humidity compared to 80% in Australia.
Parental experience of their baby having Inguinal Hernia Surgery
Inguinal hernia surgery is one of the most common electively performed surgeries in infants. Infants requiring this surgery have frequently been born extremely premature with consequent underlying chronic lung disease (CLD).
The specific aim of the parental survey is to start consumer engagement on what matters to parents of babies who have undergone inguinal hernia surgery. The Women & Children's Health Network are planning on designing a large trial on what clinicians think are important outcomes regarding neonates, but they are wanting to ensure that the trial is also looking at outcomes that matter to parents.
Did your baby have an inguinal hernia repair between 2021-2023?
To enter the research survey, please click this link:
Home Oxygen Therapy for Infants with Broncopulmonary Dysplasia
Behavioural Impacts on Children after the Perinatal Death of a Sibling
As a participant in this research, you can take part in an interview with the researchers, at your convenience, to describe your experiences of perinatal loss (the death of a child due to miscarriage, stillbirth or neonatal death – death within the first 28 days of life) and how it impacted your child/ren that were already born before your loss/es.
To be eligible you meet all of the following;
- be at least 18 years of age or older, fluent in English
- have had existing child/ren at the time you experienced perinatal loss
- the perinatal loss must have been between 6 months and 10 years ago
Your participation would involve completing a one off interview, lasting approximately one hour. All data will be de-identified prior to analysis and publication.
You may not receive a direct benefit from this study, but your participation may help discover ways to better support children and families after perinatal loss.
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