Severe Disadvantage

Over the last year, Birthrights has been working with Birth Companions on a collaborative project to investigate the human rights challenges experienced by women who are facing severe and multiple disadvantage as they go through their maternity care. This joint project brings Birthrights’ expertise in human rights in childbirth together with Birth Companions’ twenty years of experience in supporting women facing severe disadvantage during pregnancy and birth. This project is ongoing, and we are currently seeking volunteers to take part in interviews and focus groups.  

Our 2013 Dignity Survey showed that many women still do not receive respectful care or choice in childbirth and we believe that this is likely to be particularly true for women who have complex social needs and are experiencing severe disadvantage. We already know that women with multiple complex needs are less likely to access maternity care/receive less of it, have poorer maternal and infant outcomes, and are more likely to experience perinatal mental health problems (Thomson and Balaam 2016).  Women facing severe and multiple disadvantage may be going through their maternity care whilst dealing with multiple issues as diverse as poverty, homelessness, no recourse to public funds, historic or current issues with substance misuse, historic or current experience of the criminal justice system, historic or current involvement in sex work or experience of trafficking.  They may have poor mental health, be asylum seekers or recent immigrants, be survivors of domestic or sexual abuse, and experience social isolation, or physical and mental disabilities.

We know that good quality maternity care relies on respectful communication, choice and control (Cook and Loomis 2012, Better Births 2016). We know too that poor quality or disrespectful care is associated with trauma and post-traumatic stress disorder (Reed et al 2017, Harris and Ayers 2012) and this is particularly acute for women with a history of maltreatment (Seng 2015).  In a recent study, McLeish and Redshaw found that women facing multiple disadvantage frequently “brought feelings of powerlessness and low self-esteem to their maternity care”; these feelings could be “significantly worsened by disrespectful care” (2018).  Women needed individualised care with professionals they could trust to see them “as a person”; they needed “accessible and empowering information and guidance” to enable them to make the choices that were right for them.  They needed control over what happened to their bodies: something hugely important for women who may have little control over other aspects of their lives.

The need for individualised care should not be a surprise: we know that respectful, personalised care is vital to safe care and positive outcomes.  Yet the 2015 review of London Maternal Deaths found that women with complex social needs were over-represented in maternal deaths and “present a real challenge for professionals”.  It also noted that physical and psychological needs often co-present, requiring a “co-ordinated and robust care management approach” (NHS London Clinical Networks 2016).  Similarly, McLeish and Redshaw recommend that maternity professionals should be offered training and supervision to understand how confusing maternity care can be to women facing severe disadvantage, and to support them in providing information and enabling choice.

Our research aims to add to this evidence base by identifying the human rights challenges that women with complex needs may face during their maternity care.  The project is gathering experiences from women who have faced severe disadvantage during pregnancy and childbirth in London, and from the midwives, Birth Companions’ birth supporters and child protection professionals who work with them. It will aim to identify the most serious and frequent rights issues which arise for women.

How you can get involved

We are currently seeking further volunteers to take part in these interviews and focus groups.

We will be holding focus groups in October and November 2018 with specialist and non-specialist midwives, Birth Companions’ birth supporters, and child protection professionals. These will be held in London in a venue with public transport links, and will take no more than two hours in total. If you are a midwife or child protection professional, and would consider taking part in a focus group, please contact Rebecca Brione on rebeccabrione@birthrights.org.uk for more information. Information sheets for the focus groups for specialist and non-specialist midwives are available.  An information sheet for child protection professionals interested in taking part will be available shortly.

We are also recruiting women who face severe and multiple disadvantage, and who have had a baby in the last 2 – 3 years to take part in interviews. During these interviews, we will ask women about their stories and experiences of maternity care, and human rights issues. Interviews will take place in an agreed safe and comfortable location, with travel and childcare costs covered. All information will be kept confidential unless anything discussed gives rise to safeguarding concerns. If you or a woman you know might consider taking part in an interview, please have a look at our letter and information leaflet and contact Rebecca Brione on rebeccabrione@birthrights.org.uk for more information.

Following the research stage, we and Birth Companions will work together with national and local policymakers to ensure that the needs of women facing severe and multiple disadvantage are given the prominence they deserve in maternity systems.  We will also work to provide support and information to women, to birth supporters, and to maternity professionals in order to ensure that all women receive respectful and dignified care. Please get in touch if you would like to join us in working to disseminate the findings of the research following the completion of the project.  

With thanks to Trust for London for supporting the collaborative research, and to the Baring Foundation for supporting our peer partnership work with Birth Companions.