Core Outcomes in Stillbirth (COSTIL) Project

We are the COSTIL (Core Outcomes in Stillbirth) project team based at the University of Adelaide.

The team is comprised of Prof. Ben Mol, principle investigator (back), and Miss Bobae Kim, (second from left), Assoc. Prof. Edoardo Aromataris, (far right), Assoc. Prof. Philipa Middleton (far left) and Dr. Suzette Coat (second from right).

The project aim is to develop a standardised common outcome set that can be implemented across all clinical research in the field of prevention of stillbirth so that every study conducted can be easily compared and combined for better effective use. We use a two-stage approach to develop outcomes that reflect the priorities of all stakeholders. This encompasses previous literature through a systematic review, a focus group and interviews of parents who have experienced stillbirth, and a Delphi method that will combine and generate a consensus of opinions between experts in the field. Later this year, we will be recruiting the parent members of the Stillbirth Foundation for participation in our research. We will be asking them to share their views on what they consider important outcomes from their experiences.

This strategy will allow the many individual trials, reviews and guidelines in stillbirth to be effectively combined and compared, resulting in a significant contribution to future stillbirth mitigation. We expect this research will have collaboration synergies with a team of researchers in UK funded by Stillbirth and Neonatal Death charity, SNDS with whom we are working closely. We are grateful for the ongoing support of COSTIL from the Stillbirth Foundation Australia.

We look forward to continuous collaboration to reduce the incidence of stillbirth.

The Economic Impacts of Stillbirth in Australia

We know that it is not possible to put a simple dollar number on the loss of an infant through stillbirth as it has devastating impacts on families. It has a profound emotional impact on those directly affected and the community more generally. Unfortunately, the causes of stillbirth are poorly understood. This complicates the development of effective strategies to reduce the risk and effects of stillbirth.

While stillbirth leads to significant economic and societal costs, the economic and social impacts of stillbirth are poorly documented in Australia.
We conducted this study to shed light on this issue and to contribute to the conversation on the nature and scale of impacts associated with stillbirth.

Download the report findings here: economic-impacts-of-stillbirth-2016-pwc

Anxiety and acceptability related to participation in stillbirth research

Background: Stillbirth research is often hampered by the need to ‘protect’ both bereaved families as well as healthy pregnant women from distress resulting from recruitment by research staff. No studies have investigated anxiety levels of recently bereaved or healthy pregnant women participating in stillbirth research. The aim of this study was to assess anxiety levels and acceptability of women participating in a stillbirth case-control study.

Method:  A follow-up questionnaire was posted to all participants of the Sydney Stillbirth Study in 2012. The questionnaire assessed the anxiety level experienced by women as a result of their participation in the study. Questions related to the initial approach of the research staff; level of anxiety at time of consent and after the interview; and reasons for and satisfaction with participation. The Spielberger (STAI-6) anxiety scale and open-field responses were included.

Results: 35/103 case participants and 65/192 control participants returned the completed questionnaire. The majority participated for altruistic reasons. 20/35 (cases) and 58/65 (controls) stated they disagreed/strongly disagreed that participation in the study increased their anxiety. 1 in 5 cases reported that participation in the study increased their anxiety; however this did not affect their satisfaction. Timing of interview did not affect anxiety scale responses. (F=1.2; p=0.37) 30/35 (cases) and 63/65 (controls) stated they agreed/strongly agreed that they were satisfied participating in the study.

Conclusions: These findings suggest high levels of satisfaction amongst both case and control participants and no statistically significant increase in anxiety related to involvement in stillbirth research. ‘Protecting’ families may require further justification.

Researchers: Diana Bond, RN (ResearchOfficer, PerinatalLossEducator), Camille Raynes-Greenow, PhD,MPH(NHMRCCareerDevelopmentFellow), Adrienne Gordon, MBChB, MRCP,FRACP,MPH(Hons),PhD(Neonatologist)

To purchase this article: http://dx.doi.org/10.1016/j.midw.2015.07.005

Little Feet Golf Day 2013

We are so thrilled to announce that our Golf Day was a great success raising $25,000 for the Stillbirth Foundation Australia. This money will certainly be put to good use funding future research endeavours and we are so very grateful to all our players for contributing so generously on the day!

The day was characterised by the Stillbirth Foundation’s trademark quirky fun with on-course novelty games, fantastic raffle prizes, a trivia quiz that required a close observation of cards at each hole and lots of playful jabs amongst our players as they progressed through the tournament itself.

We have many people to thank for this great day but would like to first thank the sponsors of the holes who helped us raise such important funds:

Baxter Healthcare Pty Ltd

Beilby Poulden Costello Lawyers

Class Aluminium Windows

Hotel Steyne

Jackson Lalic Lawyers

Live Bookkeeping

Margetson & Associates

McDonald’s Australia

We would also like to send a great big thank you to our eager players who enthusiastically participated in the tournament, raffle, trivia and novelty games.

A special congratulations goes to the winners of the golf tournament: Alex McDonald, Matt Rawle, Brendan McDonald & Phil Pembroke. They went home with a green voucher for Ryde-Parramatta Golf Club, a case of Heineken beer and a men’s gift pack each. We also extend congratulations to the second-placed team: Darren Comber, Kevin Margetson and Miles Reynolds. They went home with a Ryde-Parramatta Golf Club and a case of Coopers Pilsner 62 beer each. We hope you all, along with winners of our raffle, trivia and novelty games, enjoyed your prizes and the day.

Finally, we’d like to give a very warm thanks to our gorgeous volunteers who withstood the chilly conditions and the light sprinkle of rain with an impressive degree of patience and enthusiasm, encouraging our players to participate in the on-course novelty games and collecting money for raffle tickets.

Thank you to the following list of companies who generously donated prizes for our Golf Day!

Aria Restaurant – $300 Dining Voucher

Bad Hair Boy – Men’s grooming products

Beauty Mate Products – Men’s grooming products

Cobra Puma Golf – Long Tom driver

Cocacola Amatil – Vitamin Water

Go Natural – Museli Cookies

Kraft Foods – Cadbury Chocolate

Peppers Convent – Accommodation voucher

Premium Beverages – Four cases of Coopers Pilsner beer

Pyrmont Point Hotel – Four food and beverage vouchers

RM Williams Pty Ltd – $500 voucher

Roberts Restaurant – Dining voucher

Rocks Brewing – Free beer on course for our players!

Smiths Chips – A packet of chips for all our players

The Golf Clearance Outlet – Vouchers and tees for all our players

Tower Estate Hunter Valley – A case of Tower Estate wine

Willow Promotions – Stillbirth Foundation Australia monogramed golf balls and towels

Saturday Night

With our Saturday Night Fever Ball behind us, we are pleased to announce that we raised an uber cool $67,000!

Our guests had a marvellous time getting into the 70s spirit not least of all because it gave them a reason to dust off and dress up in their favourite 70s duds. (Even mullets and goldfish shoes made appearances that night!)

As they grooved all night long to the funky beats of band Swerve, played our timeless Lock & Key and hilarious Quoits games, purchased tickets in our righteous raffles, and of course, bid on the raddest money-can’t-buy auction and raffle items and experiences, we were able to raise our much-needed funds for the research studies the Stillbirth Foundation intends on funding in 2014.

As such, we want to extend an immense thank you to all of our fabulous guests. We’ll see you all next year!

We would also like to thank our gorgeous committee for all their hard work in putting together this outta sight night.

Finally, we’d like to thank our awesome sponsors:

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Stillbirth team exceed their $60,000 goal.

Thanks to a combination of beautiful, warm weather and the dedication of our incredible teams on Sunday, August 11, the Stillbirth Foundation is pleased to announce that we have exceeded our $60,000 fundraising goal! Altogether, both Gold Team Stillbirth and Team Stillbirth achieved an incredible result with donations totalling over $65k continuing to pour in post-event in support of everyone who participated.

Before the race began, our gorgeous runners each received a bright balloon with our logo and little feet emblazoned on each side. When the gun sounded, they released their balloons (don’t worry they were 100% biodegradable!) and commenced the 14 kilometres up hills and down again to the finish line. Once the race was run, our amazing athletes came together at the north-end of Bondi Beach to bask in the wonderful weather. While enjoying some well-deserved brekkie, they reminisced over how brilliantly they had conquered the gruelling uphill legs of the race in memory of their babies.

The Stillbirth Foundation’s focus has been, and will continue to be, funding vital research into the causes of stillbirth. By wearing proudly the words: “Running for research ’cause six babies today is six too many” on their backs, our runners proved to others running alongside them and watching from the sidelines, that our charity can attest to the immense dedication of our supporters in raising these important funds. All of our stillparents work so hard to prevent future parents from experiencing the tragedy of stillbirth. As such, their efforts on that Sunday meant not only the world to us and our stillparents, but also the world to the 2,000+ families that will experience stillbirth this year and every year until we can find a strong means of prevention.

So, from our little team at Stillbirth HQ, thank you so very much for every hour you gorgeous people dedicated to training and the pain you pushed through to complete the City2Surf. We also extend our most profuse gratitude to everyone who dug deep and generously donated what they could to support our amazing runners so that we could raise a very cool $65,000 for research.

We hope we can count on everyone’s support again next year!