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Study finds care inadequacies in disabled pregnancy, childbirth and early parenting

A study by the University of Liverpool and Bournemouth University (BU) has found that some disabled women are not receiving appropriate personalised care during pregnancy, childbirth and early parenting.

The study, commissioned by Birthrights, the human rights in childbirth charity, indicates that pregnant disabled women’s voices are often not heard during their pregnancy, childbirth and early parenting but that communication has a significant impact on their care.

Researchers from Liverpool and BU surveyed and interviewed women with physical or sensory impairment or long term health conditions. The final report highlights the challenges that disabled women face in the current maternity system.

The research, conducted by Dr Bethan Collins from Liverpool and Dr Jenny Hall, Jillian Ireland and Professor Vanora Hundley from Bournemouth University, found that many participants felt that they were not listened to and that this had the potential to reduce women’s choices and make them feel like they had less control.

Women described needing to know the options for their care and to be enabled to make decisions about the best care for them, in the context of disability. A major weakness is when women’s experience of their own bodies was not respected by health care professionals and some women reported a lack of reasonable adjustments. More awareness of disability is needed in the providers of maternal healthcare.

Dr Bethan Collins, Senior Lecturer in Occupational Therapy at the University of Liverpool, said: “The findings highlight the importance of communication: service providers need to both respect women’s knowledge of their own bodies while also providing the expert support to enable women to make informed decisions about their care.

“Continuity of carer was so important to many of the women, but does not seem to be common practice. As a researcher and as a disabled parent myself, I empathise with the experiences of women in our study. There is a job to do to raise awareness of disability and enable women to have a dignified experience.”

Professor Vanora Hundley, Deputy Dean of Research and Professional Practice at BU, said: “The National Maternity Review, Better Births, highlighted the importance of personalised maternity care that focuses on the needs of the woman and her family. Good communication is a key to achieving woman centred care, and our findings suggest that this remains a particular challenge for women who have a disability.”

Birthrights’ Chair, Elizabeth Prochaska commented: “It is fundamentally important that disabled women – like all women – receive dignified maternity care that respects their human rights. The research published today highlights that much more work is needed by maternity services in order to provide high quality individualised care to all disabled women. This must include ensuring that all women are given all the information they require to make decisions about their care, in a way that respects their own knowledge about their bodies.”

To read the report in full, visit: www.birthrights.org.uk

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