Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period

Abstract

Background: It has been estimated that 9.4% of women giving birth in the United Kingdom have one or more limiting longstanding illness which may cause disability, affecting pregnancy, birth and early parenting. No large scale studies on a nationally representative population have been carried out on the maternity experiences of disabled women to our knowledge.

Method: Secondary analysis of data from a survey of women in 2010 by English National Health Service Trusts on behalf of the Care Quality Commission was undertaken. 144 trusts in England took part in the postal survey.Women self-identified with disability and were excluded if less than 16 years of age or if their baby had died. The 12 page structured questionnaire with sections on antenatal, labour and birth and postnatal care covered access, information, communication and choice. Descriptive and adjusted analyses compared disabled and non-disabled groups. Comparisons were made separately for five disability subgroups: physical disability, sensory impairment, mental health conditions, learning disability and women with more than one type of disability.

Results: Disabled women comprised 6.14% (1,482) of the total sample (24,155) and appeared to use maternity services more than non-disabled women. Most were positive about their care and reported sufficient access and involvement, but were less likely to breastfeed. The experience of women with different types of disability varied: physically disabled women used antenatal and postnatal services more, but had less choice about labour and birth; the experience of those with a sensory impairment differed little from the non-disabled women, but they were more likely to have met staff before labour; women with mental health disabilities also used services more, but were more critical of communication and support; women with a learning disability and those with multiple disabilities were least likely to report a positive experience of maternity care.

Conclusion: This national study describes disabled women's experiences of pregnancy, child birth and postnatal care in comparison with non-disabled women. While in many areas there were no differences, there was evidence of specific groups appropriately receiving more care. Areas for improvement included infant feeding and better communication in the context of individualised care.