Improving outcomes for pregnant women with disability and their families

Summary

The aim of this work programme is to help improve health outcomes for women with disability by (a) providing some estimates of the number of disabled women using maternity services in England, along with data on their characteristics, experiences of the healthcare system and outcomes; (b) conducting a systematic review on effectiveness of interventions to improve outcomes for disabled women and their families; (c) conducting a qualitative study to examine in detail the experiences of maternity services for women with learning disability.

The specific objectives address the following research questions:

1. What proportion of women giving birth in England are disabled?
2. Which particular disabilities are commonest?
3. To what extent is disability associated with other disadvantage in pregnant women? For example are there associations with poverty, domestic abuse, substance misuse living in areas with poor amenities and high crime?
4. Are there any particular (groups of) disabilities which are associated with either particularly poor birth outcomes or with patient safety issues (involving communication problems for example)?
5. How do disabled women compare with those not disabled on the following: Pregnancy outcome, mental health during pregnancy and the postnatal period, accessibility of services, information needs being met by clinicians, empowerment, involvement in decision making, inclusive, positive attitudes from staff, quality and choice of services.
6. Which health service interventions are effective in improving outcomes in disabled pregnant women and their families?

The work commenced with an analysis of data from the Millennium Cohort Study mothers and a systematic review of the effectiveness of health service interventions to improve outcome in this group as well as an analysis of data from the National Maternity Survey 2010.We are now going on to start a qualitative study in women with learning disability.

Publications

Journal Articles

• Sumilo D, Kurinczuk JJ, Redshaw ME, Gray R. Prevalence and impact of disability in women who had recently given birth in the UK. BMC Pregnancy Childbirth. 2012;12:31.
• Sumilo D, Kurinczuk JJ, Redshaw ME, Gray R. Association between limiting longstanding illness in mothers and their children: findings from the UK Millennium Cohort Study. BMJ open. 2013;3(12):e004190.
• Redshaw M, Malouf R, Gao H, Gray R. Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy Childbirth. 2013;13:174.
• Malouf R, Redshaw M, Kurinczuk JJ, Gray R. Systematic review of health care interventions to improve outcomes from women with disability and their family during pregnancy, birth and postnatal period. BMC Pregnancy Childbirth. 2014;14(1):58.
• Malouf R, Henderson J, Redshaw M. Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period in England: data from a national survey. BMJ open. 2017;7(7):e016757.
• Malouf R, McLeish J, Ryan S, Gray R, Redshaw M. ?We both just wanted to be normal parents?: a qualitative study of the experience of maternity care for women with learning disability. BMJ open. [10.1136/bmjopen-2016-015526]. 2017;7(3).