The experiences of perinatal care for women who use and are in treatment for drug use

The Stepping Stones Study

Women who use drugs during pregnancy have complex health and social needs. Stigma can be a barrier to their engagement with services. The Stepping Stones study aimed to identify way to provide care for this group of women to encourage engagement and improve health outcomes.

The study was funded by the National institute for Health Research  (NIHR130619) and was conducted by researchers from King’s College London and the Universities of Stirling and Huddersfield. Researchers worked with an advisory group made of health and social care practitioners, and people with lived experience of substance use treatment.

Study design

created by Louise Honeybul

Research participants were recruited from maternity services. They were invited to take part in up to five interviews to tell us about their experiences of the health care services  they were in touch with during pregnancy and after their babies were born. To help them tell their stories, women and researchers created visual timelines to describe important events in their lives.

Who took part in the study?

Thirty-six women took part in the study in four contrasting sites in England and Scotland. All the women who took part were receiving treatment for drug use, mostly for heroin or prescription opioids (e.g., codeine and tramadol). Many women had experienced abuse as children and in their relationships as adults. Many described experiencing anxiety and depression. Many had also experienced children being removed from their care.

Treatment for opioid use

Opioid replacement medications are the standard treatment for opioid withdrawal symptoms and include medications such as methadone and buprenorphine. These can also be prescribed to women in pregnancy. Women are not encouraged to stop replacement treatment during pregnancy as this can present a risk of miscarriage and relapse. Babies exposed to any opioids in utero - heroin as well as prescribed opioid replacement medications - can experience withdrawal symptoms, meaning that babies are more difficult to soothe. These symptoms can take some days to appear and babies are monitored for up to five days in hospital after their birth, with some babies needing treatment.

Care pathways

We identified ‘critical moments’ in the care pathway when access to particular kinds of support and resources can make a difference to  women’s experiences and outcomes.

Prenatal Care

Prenatally, women often had supportive relationships with specialist midwives. They were  often worried about the impact that drug use and medications may have had on their babies in utero and appreciated clear communication from midwives regarding this topic. They also valued being able to access a range of services in one place rather than having to travel to multiple appointments.

Postnatal inpatient care

Women often felt vulnerable in hospital after giving birth. They told us that access to opioid replacement medications was sometimes poorly managed by staff and they sometimes felt judged.

“As soon as they found out in the postnatal ward that I had the [medication], they took it off me. They said, ‘You can’t have controlled substances in here’, and I just felt immediately that they were judging me”

Although breast feeding is safe for infants of women who are receiving medications for opioid use; information about breastfeeding was not always clear: “So I did breastfeed, because the midwives were telling me, ‘Yeah, you can,’ but the consultants was telling me, ‘No, you can’t”.

Women were sometimes able to stay in hospital with their babies if they needed to be treated for withdrawal symptoms, but in some hospitals women were discharged before their babies, which made it difficult for women to feed and care for them.

Postnatal care

Some women in the study had not engaged with substance use treatment or prenatal care until after the ten week ‘window’ in which ‘booking’ appointments should ordinarily take place. Often this was because their pregnancies had not been planned and they had not realised they were pregnant. Outcomes for these women depended on the the services and treatment options that were available to them in different sites.

In one site, women who had engaged with substance use treatment or maternity care were given access to specialist mother and baby treatment services after their babies were born. In other sites, women were not offered these services, making them feel that they were not given a ‘chance’.

“I’ll move. I’ll do anything. I go into rehab. I just want a chance with my child.’ I think given half a chance, I’d be a brilliant mum. I really would.”

Care for women whose babies were removed from their care

 

Women whose babies were removed from their care often felt that communication about the removal of their babies  had not been clear. Services for new mothers were no longer available to them, and mental health support was not always available.

“I've never had any checks. Nothing at all. I had the baby… It’s like I just gave her up. It’s like I never had a baby. They wanted me to just not behave like a mum”.

This is very concerning as we know that women who lose care of their babies are particularly at risk of overdose and death.

Recommendations

Our findings suggest there is a need to improve the way care is coordinated for this group of women throughout their perinatal journeys, including:  

• Continuity of care pre and postnatally should be guaranteed

• Health and social care services should be be delivered in one place so that women do not need to travel to multiple appointments

• Staff need to be informed about substance use treatment medications and about the complex lives women may have led, so that they can provide compassionate and evidence based care

• Women need access to treatment and support services postnatally wherever they live

• Supportive care is needed for women whose babies have been removed from their care

NEXT STEPS

The Stepping Stones team are working with Outside Edge theatre Company, the only UK theatre company that specialises in plays concerning addiction, to develop an interactive play based on our findings for KCL Midwifery BSc students, midwifery and social work students at Sheffield University and Sheffield Hallam University in December 2025 .

Photo: Adrianne McKenzie

The play will be based on the interview transcripts from our study and will give students an insight into women’s experiences of care systems that sometimes do not meet their needs.  To find out more  about the Outside Edge performances in London and Sheffield, please contact Polly Radcliffe

ACKNOWLEDGEMENTS

We are grateful to the women who took part in the study and the maternity care staff in the four sites who helped us to carry out the research.  The study was funded by the NIHR (NIHR130619).