New research: Disabled women need to be heard and respected as experts about their bodies

Research published today and commissioned by Birthrights shows that disabled women are generally not receiving the individualised care and support they that they need to make choices about their maternity care.

Today’s publication includes and builds on the survey research published in 2016 which found that more than a quarter of disabled women asked felt that their rights were poorly or very poorly respected.  A quarter felt they were treated less favourably because of their disability, and more than half (56%) felt that health care providers did not have appropriate attitudes to disability. Some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”.

The new report published today presents data from in-depth interviews with disabled women.  It highlights the need to treat disabled women – as all women – as individuals with their own specific needs.  It emphasises the need to recognise that disabled women are experts in their own conditions and what they mean for their bodies and choices in childbirth.  Participants described distressing scenarios of having to prove that their choices were suitable, undermining their dignity. In one very concerning case, one participant described not being given all the information she needed to make an informed decision about her care during labour, and being denied the choices she would have made as a result.  Respecting women’s dignity means respecting and trusting women’s individual needs and knowledge.

Participants also described having to explain themselves repeatedly to each new care provider; at times feeling as if the focus was on their impairment rather than their needs as a person: “You’re not a pregnant woman you’re just a body. Because if I was a person to them, if I was a pregnant woman they would have read my file”. Women who had experienced continuity of carer spoke very positively of their experiences and of experiencing more dignified care.

All women had some poor experiences of postnatal care.  In some cases participants did not see the point in raising issues when continuity of care was lacking and midwives were short of time; something the researchers suggest “must raise questions of safety of practice”.

Participants had mixed experiences of antenatal and parenting support: some women were provided tailored support early on but others felt that they were expected to take the lead in asking for what they wanted or found that activities or information were not offered in an accessible way.

Throughout the study, women felt that they had to be empowered, enabled, informed and supported to advocate for their rights.  They emphasised the need to be listened to and treated as individuals.  Not doing this has a long term impact: women who were not listened to and whose rights were not respected lost confidence and felt undermined long after the birth.

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.”

Professor Vanora Hundley 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.”

Dr Bethan Collins added: “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.”

The research suggests that maternity services need to adapt to provide high quality individualised care to all disabled women. This includes improving both attitudes and knowledge of disability and disabled women among maternity professionals, ensuring all disabled women receive continuity of carer, allowing additional time for disabled women to discuss their needs, preferences and choices, auditing access and ensuring that reasonable adjustments as required under the Equality Act 2010 are made available.

The research was conducted by Jenny Hall, Jillian Ireland and Professor Vanora Hundley at Bournemouth University and Dr Bethan Collins, Senior Lecturer in Occupational Therapy at the University of Liverpool.

With thanks to the Matrix Causes Fund for supporting this work.

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