Research backs changes in medical records to support mothers with a disability

The research by La Trobe University and the Royal Women’s Hospital in Victoria found the rates of preterm births for women with a disability were more than four times higher than the general rates of preterm births across the hospital.

The number of babies with a low birthweight, as well as the number of babies admitted for neonatal intensive care or special care, were twice as high if the mother had a disability.

The research was based on a comparison between data collected over 2014 to 2018 from women receiving care in the hospital’s Women with Individual Needs clinic and data collected from all women who gave birth at the hospital in 2017 and 2018.

The clinic is the only specialist pregnancy unit for women with a disability in Australia and for the study looked at birth outcomes of women with various types of disabilities including physical, cognitive, sensory and intellectual.

Midwife Cherise Smith runs the clinic and was a member of the research team.

She says that the disability status of mothers was not routinely recorded in maternity care, despite 9.5 percent of women who are within the childbearing age bracket having a disability.

“This can cause a number of significant problems for these women and their babies,” she says.

“By asking women if they have a disability and accurately entering their disability status into the medical record, clinical teams can share relevant information and partner with women to customise maternity care to meet their specific needs.

“It also helps identify existing comorbidities that can impact their pregnancy.”

Ms Smith says the hospital’s specialist clinic involves a social worker and a midwife in pregnancy care to ensure mothers were able to attend antenatal appointments, receive disability-aware care and are able to look after their baby as independently as possible.

But despite the difference at the hospital’s specialist clinic for women with a disability, the research found 35% of babies required resuscitation, compared to 11% of babies born across the hospital, and 54% of babies born to women with a disability received formula while in hospital, compared to 28% of babies across the hospital.

More than half of the women with a disability which were part of the study had a caesarian section birth, while 32% of births hospital-wide were by caesarian.

A system of identifying the different care needs of a pregnant woman with a disability would have more benefits than just the obvious improvement to care for the mother and the baby, according to lead researcher and La Trobe University PhD candidate Charlie Smithson.

“Identifying women with disabilities in maternity services on a national scale will allow us to further understand the potential links between disability and poorer perinatal outcomes,” she 

says.

“At this stage there’s lots we have yet to learn about the effects of various disabilities on pregnancy and birth.”

Ms Smithson says research was continuing around the issue because the potential impact of the research was so important to many women.

“The next phase of our research will enable us to understand how women like to be asked about disability status and also give us more insight into the existing identification processes in maternity services nation-wide,” she says.

The recently published research was included in the Australian and New Zealand Journal of Obstetrics and Gynaecology and is the first study of its kind to be conducted in Australia, although evidence is being collected around the world about the pregnancy and birth outcomes of women with a disability.