Australian Living Guidelines for the Management of Respiratory Distress Syndrome (RDS)

YOUR VOICE IS NEEDED! 

Australian Living Guidelines for the Management of Respiratory Distress Syndrome (RDS)

RDS is a breathing condition affecting many babies born prematurely because their lungs are not fully developed. These new Australian Guidelines will bring together the best evidence to support doctors and nurses caring for babies with RDS across the country with the goal of improving outcomes and ensuring more consistent, high-quality care that meets the needs of both babies and their families.

Parents, carers, adults born prematurely and people with diverse community perspectives will join health professionals and researchers on the Guideline Development Group (GDG). Your perspective is essential to making sure these Guidelines work in the real world and truly meet the needs of families.

What’s involved:

• Participating in virtual meetings (eight meetings over 2026–2027, each up to 2 hours)

• Reviewing documents and providing feedback between meetings

• Sharing your experience to help shape guideline recommendations and how they’re put into practice

*Important: Community members on the GDG will be reimbursed for their time and expertise.

More information is available in the Expression of Interest Form.

 

Term 3 playgroup enrolments open

Registrations are now open for Term 3 Parent Circle and Playgroup. We have really enjoyed meeting lots of new families through these programs and especially seeing all of the little ones making beautiful progress. Places are limited so don’t delay in registering. Why not come along with a Neonatal Unit buddy and continue your connection now you’re home. All of the details are in the flyers. Register through our webstore.

Living with disability or life limiting condition?

Are you parenting a 5-18 year old? Does your child have experience living with a disability or life-limiting condition?

You may be eligible to participate in our research study.

 

What is the research about? We would like to speak to a range of people who are parenting and their adolescents about their thoughts on a general health questionnaire. The questionnaire might be used in research or clinical health settings and asks children (or their parents) to report on general difficulties with their: ‘mobility’; ‘looking after myself’; ‘doing usual activities’; ‘pain/discomfort’; and ‘feeling worried, sad or unhappy’. We are interested in ways we might improve this questionnaire to better meet the needs of children and young people who are living with life-limiting conditions or disability. The interviews would go for 45 minutes to 1 hour. You will be reimbursed for your time.

 

How to get started? Simply scan the QR code on the flyer to complete a short survey to express interest in participating in the study. We will only be selecting a small number of participants, and we aim to reach people with a range of different experiences. We may not contact everyone who completes the expression of interest survey.