Protecting human rights in childbirth

Disability

Disabled women’s experiences of maternity care 

In 2013, our Dignity Survey investigated the maternity experiences of over 1100 women. Only a small number of those women described themselves as disabled, but those who did reported poorer experiences of childbirth than other respondents. They told us they:

  • received inadequate information about their choices more often than other women;  
  • were unhappier with the availability of pain relief;
  • felt they had less choice and control over their birth experiences.  

To understand the issues further, we commissioned Bournemouth University to carry out survey and interview research on the experiences of women with a physical or sensory disability throughout pregnancy, birth and postnatal care. This was published by Birthrights and Bournemouth University in March 2018, and the researchers published the survey findings in BMC Pregnancy and Childbirth in August 2018.

We will be working with maternity and disability organisations, researchers and others in 2019 to use the findings of this project to improve care for disabled women.

Research findings 

“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”.  

Our research found that disabled women are generally not receiving the individualised care and support they that they need to make choices about their maternity care. The first-stage survey (initially published in 2016) found: 

  • more than a quarter of disabled women felt that their rights were poorly or very poorly respected; 
  • a quarter felt they were treated less favourably because of their disability; 
  • more than half (56%) felt that health care providers did not have appropriate attitudes to disability; 
  • only 19% of women thought reasonable adjustments had been made for them and some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”, despite the duty placed on the public sector by the Equality Act 2010.  

The second stage of in-depth interviews 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 these mean for their bodies and choices in childbirth. 

“I did not feel respected, I did not feel […] my that my wishes were being respected, that my dignity was being respected, that my […] physical limitations were being respected.” 

Women described not being listened to; having to prove their choices were suitable, causing distress and undermining their dignity; not being given all the necessary information to make an informed decision, and being denied the choices they would have made as a result. All women had some poor experiences of postnatal care and there were mixed experiences of antenatal and parenting support.

“It was hard seeing a different obstetrician every single time. I think I saw 4 different obstetricians and some were more experienced than others, I mean a lot of them didn’t really have much experience of MS at all.” 

Women who had experienced continuity of carer spoke very positively about this and felt they had more dignified care. Those who did not have continuity of carer 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.  

Overall, women felt that they had to be empowered, informed and supported to advocate for their rights. They needed to be listened to, trusted in their knowledge of their bodies and needs, and respected as individuals. Failure to do this has a long term impact: women whose rights were not respected lost confidence and felt undermined long after the birth.

Read the full reports 

With thanks to the Matrix Causes Fund for supporting the research and to the Esmée Fairbairn Foundation for supporting our planned work in 2019.

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