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.
Be Sweet to Babies
Families can play an important role in reducing their babies’ pain during painful hospital procedures. The Be Sweet to Babies research team at the University of Melbourne, in partnership with the Miracle Babies Foundation, invite you to participate in a research project that will help us to better support families in reducing their babies’ pain during painful hospital procedures.
We are inviting families of babies to watch a short video about strategies for reducing babies’ pain during painful medical procedures. We would like to know whether you have ever used these strategies, and whether you think the video is useful.
The information you provide will help inform further research about supporting families to use and advocate for strategies to help reduce their babies’ pain during painful hospital procedures.
If you are a parent or caregiver, we would be grateful if you would consider being involved. We would also be grateful if you would consider sharing information about this study with others who have had similar experiences.
What will I be asked to do?
Participation in the project involves watching a 5-minute video on newborn pain management strategies and answering a 20-question survey. The total time commitment for this research project will be around 10 minutes.
The video can be viewed at the link below:
Where can I get further information?
Please read the attached Plain Language Statement, which describes the project and explains what your participation would involve. You can read the plain language statement HERE.
If you have further questions about the research, you can contact the researcher by email at: [email protected].
How do I agree to participate?
To participate in this project please follow the link provided below to access the survey, and the built-in consent form.
We would greatly appreciate your help with what we believe to be an extremely important and worthwhile project.
Paid Parental Leave for Parents of Babies requiring Neonatal Intensive or Special Care
Are you a parent of a baby who has required hospitalisation in a neonatal intensive or special care nursery directly after being born on or after January 2013?
The Miracle Babies Foundation, the Centre of Research Excellence for Newborn Medicine at the Murdoch Children’s Research Institute, and The University of Melbourne are undertaking an important research study. This study will help us to learn more about your experiences of receiving Australian Government or industry paid parental leave schemes in Australia and the financial impact of having a baby (or babies) requiring hospitalisation directly after being born. We plan to use the study results to help ask for changes to paid parental leave schemes around Australia. Taking part involves completing an online survey. Please click on the following link to learn more about taking part.
Impact of Coronavirus/COVID-19 on special/intensive care for newborns – a parents’ perspective
Are you a parent of a sick or preterm baby that was born during the Coronavirus/COVID-19 pandemic?
The Coronavirus/COVID-19 pandemic creates exceptional challenges, especially for the care of the most vulnerable groups of patients – such as sick and preterm born children. It is therefore important to explore parents’ experiences related to these challenges as parents play a crucial role in the care of their babies – not only at home but also in the hospital setting. Having unique, first hand insights into the problems parents perceived will help identify strengths and weaknesses of the care provision in the context of crisis response. Finally, conclusions can be drawn for future emergencies and the impact on neonatal care.
This research is carried out by the Scientific Affairs Department of the European Foundation for the Care of Newborn Infants (EFCNI) (www.efcni.org). For this study, EFCNI collaborates with representatives of parent organisations, COINN (Council of International Neonatal Nurses), ESPR (European Society for Paediatric Research), NIDCAP (Newborn Individualized Developmental Care and Assessment Program), and UENPS (Union of European Neonatal & Perinatal Societies). For further information, please contact: [email protected]
The Ethics Committee of Maastricht UMC+ officially waived the need for ethics approval. EFCNI received a donation by Novartis Pharma AG in support of this study.
Women from rural or remote areas of Australia who have had a premature baby within the last 6 months
Have you given birth to a baby less than 32 weeks gestation in the last 6 months?
Did you live more than 70km from the hospital where your baby was cared for? Researchers from Flinders University would love for you to share your story.
Click on the link to complete a short questionnaire or for more information contact Kerrie Venning (Flinders University) via email at [email protected]
Fathers Perceptions of Having a Baby in the Neonatal Unit during Covid-19
Have you recently become a dad during the Covid-19 pandemic and was your baby admitted to a neonatal unit or discharged during the pandemic? If you've answered yes, we would like to invite you to participate in this international research survey to explore the perceptions and experiences of fathers of infants who are currently on admission in the neonatal unit or have been discharged during the Covid-19 pandemic. The survey takes 15-20 minutes to complete.