Parental understanding of extremely Preterm infants Outcome Data (POD Study)
The Perinatal Society of Australia and New Zealand (PSANZ) want your help to enhance the information presented to parents facing extremely preterm birth. The purpose of the study is to help enable parents to make the best decisions possible for their baby and their family.
What is the POD study about and why is it important?
Parents receive lots of information about potential health outcomes when facing extremely preterm birth. We know that how clinicians present information can influence parents’ understanding and how they use information in decision making. Little is known about parents’ understanding of outcomes data, how best to provide complex information in a meaningful way to aid decision making or what outcomes parents think are important. This study aims to improve communication by finding ways to present relevant information that helps parents make the best decision for their child and their family.
The study will:
- determine parents’ views on and understanding of neonatal outcomes data following extremely preterm birth
- identify outcomes parents consider important
- explore parents’ experiences of the consultation process, and
- provide recommendations to optimise communication to help parents make the best decisions for their child and their family
Can you help?
To assist PSANZ, we are looking for parents of babies born at or below 28 weeks gestation in the last 5 years to complete a survey.
The survey can be completed here and will take about 30-40 minutes to complete.
Will you help spread the word
If you don’t fit the criteria yourself, can you please help spread the word and raise awareness of this survey. The more parents of babies born at or below 28 weeks gestation we can find, the more robust the feedback will be. Please share the details with those you know who had a very early baby and also groups and networks that can help us reach them.
This sounds like a recent study I did
The Little Miracles Trust helped out with a clinical working group (of specialists and nurses, midwives and obstetricians) survey in late 2017. This was for babies born between 23 – 26 weeks gestation. While some of the subject matter is similar, this is a different survey and the POD survey has wider eligibility criteria (babies born up to 28 weeks gestation) and covers different material.
Why both Australia and New Zealand participants?
This study covers both Australian and New Zealand parents as the researchers are members of the Perinatal Society of Australia and New Zealand (PSANZ). PSANZ has a Consumer Advisory Panel who is looking to learn more in this area for both countries.
The Little Miracles Trust is proud to work alongside the clinical and research teams who deliver expert support to the 5,000+ babies cared for in neonatal units in New Zealand every year. Working with them, we can:
- help to get a ‘patient voice’ and direct feedback from those who have been on a neonatal journey
- assist researchers to get participants for their various studies
The continual focus on enhancing the clinical care and supporting practices for neonatal families is a key reason New Zealand is a leader in this field. Keep an eye on our website and social media for more opportunities to share feedback and contribute to the neonatal community.
—————————————————-
Supporting neonatal families
We receive great feedback on providing the ability for parents to share their experiences. Contributing through surveys gives graduate families a way to help current and future neonatal families. Another way to assist is the sharing of personal stories . . .
The personal stories section is the most read of our website. Parents on a current neonatal journey tell of the hope and encouragement the stories provide – through knowing that others have been there before, and their thoughts and emotions are normal.
Would you consider sharing your story?
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email info@littlemiraclestrust.org.nz
Interested in how The Little Miracles Trust supports families going through the stress and anxiety of a neonatal journey?
Here’s a gallery of support examples.
