If you are someone that understands how important maternity care and the perinatal period are for mother, baby, family and community health and wellbeing, please donate to support meaningful data that can lead to improving healthcare services and mother's experiences of healthcare on the ground.
What's happening for mothers and in our maternity care?
It is estimated that 1 in 3 women in Australia leave their maternity care traumatised. 1 in 3 mothers walking around in our communities with the devastating effects of trauma.
And then there are physical harms which, sometimes can be incredibly detrimental, incurred during pregnancy and birth and during care received or not received. To the mother; 3/4 degree perineal tears, nerve damage, bone and muscle tissue injuries, pelvic organ prolapse and so on, and injuries to baby such as bruises and swelling, nerve damage, brain damage, fractures and respiratory complications etc.
PNDA - postnatal depression and anxiety is experienced by 1 in 5 mothers and 1 in 10 fathers. PNDA touches not only the parent experiencing the condition, but can also have impacts on the child and wider family, with some of these impacts lasting a lifetime. The first year estimated health, wellbeing and economic costs of PNDA are around $877million in Australia.
Suicide is the main cause of death in new mums, 21% of maternal suicides are due to severe depression.
We know that at least 3% (some estimates put this number closer to 9%) of women experience serious PTSD. Post Traumatic Stress Disorder symptoms include intrusive re-experiencing of a past traumatic event (which in this case may have been the childbirth itself), flashbacks or nightmares, avoidant behaviour and more. The syndrome can be and is, debilitating.
There are also the many unseen/less recorded ongoing and long-term issues associated with the wellbeing of the mother and baby and how they ripple into communities in these vital first months and years (e.g. first 2000 days).
Why is this happening?
Well. We have some of the information. We know that the better informed and prepared you are for your perinatal journey, the more engaged and involved you are in your care, the more continuity you received during your care - the better the outcomes and the experiences. But the information we have is patchy.
Heath services capture very little meaningful data on patient experiences. There is a lack of global (across the board) leadership on terminology and definition when it comes to maternity care and maternity health consumers experiences federally and even on state/territory levels. Each service locally will also have a different way of defining and measuring care and experiences.
Much of this trauma can be prevented with a better understanding of what is happening on the ground and building better systems.
This is one of the core reasons the BESt study was devised. To capture meaningfully, the experience of maternity healthcare users in Australia so we can better understand what is actually happening and for the study to be used to advocate for families and improve services. The study is incredibly well devised and is by far the best we have come across as health consumer advocacy and support organisations, to date.
We want this pivotal study to reach EVEN MORE families and produce stronger data!
The BESt study is already well underway and is the largest of its kind to be conducted in Australia, but we want the study to reach EVEN MORE people. People from diverse backgrounds, from rural and remote areas, from low-socioeconomic areas and those experiencing fragmented care. These people are currently less represented. We also know that with adequate funding, the study data sets can reveal even more vital information on better understanding health consumer experiences.
Where YOU come in!
This is where you, individuals and communities come in - help us raise the money to enhance the potential of this study, each more families and send a clear message to the maternity health community in Australia - it is unacceptable for so many of us to walk away with unnecessary trauma. For any of us!
Please donate to support this vital research project - any amount is meaningful and incredibly helpful!
What is the BESt Study?
BESt - Birth Experience Study has been developed by Western Sydney University in partnership with the Birth Time documentary film and is supported by PBB Media and consumer advocacy groups Maternal Health Matters, Maternity Choices Australia, Homebirth Australia, Maternity Consumer Network, Canberra Mothercraft Society, Human Rights in Childbirth, Lamaze Australia and Rhodanthe Lipsett Indigenous Midwifery Charitable Fund.
The survey is the largest survey to date that explores women’s experiences of maternity care. The survey explores women’s experiences during pregnancy, labour and birth and the postnatal period:
· Maternity models of care are identified and the quality of continuity of care is measured using the Nijmegen Continuity measure.
· We explore women’s perceptions of involvement in decision making with the Mothers on Decision Making (MADM) measure
· their experiences of respect using the Mothers on Respect index (MORi).
· We also measure mistreatment with the Mistreatment Index (MIST). These have been designed and validated through the Birth Place Lab team in Canada.
· There are many open ended questions throughout the survey including questions exploring positive support, hurtful comments, birth trauma, obstetric violence and regrets.
· We look at interventions used and birth positioning and breastfeeding.
· Although the survey is comprehensive it is not overly long and averages at about 30 minutes length.
Aims of the BESt survey
This project aims to explore the experiences of women giving birth in Australia.
The objectives of the study are:
1) Explore the impact of model of care on women's birthing experiences
2) Determine the factors contributing to positive and negative birth experiences
3)Discover the prevalence, levels and impact of birth trauma on women and their families
So far, we have had funding from Birth Time for the printing of postcards with the survey information and QR code which were distributed at screenings of the documentary. Other than that, we are currently unfunded. We can apply for a Partnership grant through the School of Nursing and Midwifery here at Western Sydney University.
The School contribution to the partnership grant scheme will be between $5,000 and $10,000, but this requires matching funding from the industry partner. Partners must provide matching new cash, plus GST. For example, if we leverage $7,500 from a partner/partners, the School would match this with $7,500 giving a total of $15,000 for the project.
The funds would be used for:
· Translation of the survey into 6 languages
· Transcribing qualitative data
· Statistical data analysis by statistician
· Creating a report for lobbying
Translation of the survey
Translating the survey would allow for women where English is not their first language and for recent migrants to Australia to participate. Traditionally in research the voices of migrants and refugees, where English is not easily understood, are not heard. We feel it is essential for this survey which focuses on the maternity experiences of women to hear the stories of all women, especially women from CALD backgrounds and Aboriginal and/or Torres Strait women.
We wish to translate the survey into 6 different languages. These languages are amongst the most spoken languages in Australia based on data from the Australian Bureau of Statistics. The written languages chosen are:
· Chinese simplified
Following translation, we will contact community groups around Australia for help in reaching women in those language groups.
About the organisers
This GoFundMe campaign is led by Australia's leading maternity advocacy and support organisations: Maternity Choices Australia, PBB Media, Maternal Health Matters, Homebirth Australia, Maternity Consumer Network, Canberra Mothercraft Society, Human Rights in Childbirth, Lamaze Australia and Rhodanthe Lipsett Indigenous Midwifery Charitable Fund.
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- Kylie King
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