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Decisions about medication during pregnancy

What is this research?

Women who take medication for a mental health condition face difficult decisions if they want to have a child. Should they stop taking their meds or reduce the dose while they are pregnant because of a possible risk to the baby? What if this makes their mental health deteriorate?

The situation is especially complicated when there is a lack of clear, evidence-based guidance on best medical practice as this means clinicians are also having to deal with uncertainty.

This research project explored how women made this decision. It was carried out by peer researchers, the McPin Foundation and researchers at University College London. The project is part of a larger research programme, funded by the NIHR HTA programme, looking at the risks and benefits of psychotropic medication use during pregnancy. You can read a paper about those results here

Why is this research important?

Psychotropic medications are those that affect people’s mood or behaviour. This includes antipsychotics, mood stabilisers and anti-depressants that are often used to treat severe mental illnesses such as schizophrenia, bipolar disorder and other psychotic disorders. Many women who are treated with these drugs may become pregnant, through both planned and unplanned pregnancies. At the moment, there is a dearth of evidence-based information about the risks of taking these drugs during pregnancy, or the risks of choosing not to take them. As a result, is hard for women to get the advice that they need to make these decisions. It is hoped that this research may help women who find themselves in this situation and their practitioners, by identifying opportunities to provide greater or different kinds of support.

What are we doing?

We teamed up with researchers at University College London to find out what happens to women who become pregnant while they are taking psychotropic medication. The researchers had access to patient records going back to 1995 and looked at whether women chose to keep taking the drugs or stop, and whether either decision affected what happens to them or the child. The researchers were advised by a group of women, recruited by McPin, who have experience of taking these drugs and were directly affected by these concerns.

Alongside the study of patient records, McPin conducted an interview study with 12 women with psychosis who have had to make these decisions. We wanted to know what they thought about the issues, what worried them, what information or advice they had been given, and what decisions they made.  The research was being designed and carried out by peer researchers with first-hand experience of the issues involved.

What was the outcome of the project?

An illustration encapsulating the main messages of the research

We found that the women’s central dilemma was whether to continue taking medication to ensure they stay well and can care for their baby in the face of fear and uncertainty about the risk it posed to their baby’s health. This caused a lot of distress. Despite this, the research found that the women retained strong feelings of personal ownership for their decisions. They drew on their past experiences and views about medication as well as information in books, leaflets, the internet and in published medical papers. Some talked through what they found with their clinicians and together managed this ‘decisional uncertainty’.

Some women decided independently what they wanted to do and presented this to their clinician. Others took a shared decision-making approach – seeking guidance before making their choice. Neither approach was straightforward and often involved negotiation, and in some cases, handling coercion. When women felt that their decision wasn’t supported, either by their clinician or their partners and families, this led to feelings of stress and judgement. Ultimately, whatever their decision and process of getting there, the women took personal responsibility for their choice and framed it as their own, even if they were still conflicted about it.

Resources

You can read an article about the project published in the peer reviewed journal Mental Health Review Journal here. To read about what it was like to be a peer researcher on the project, check out Charlotte’s blog.

Here are some suggestions for how to health professionals and services could make the decision-making process easier for women.

Click the button below to download an illustration of the main messages from the research.

We are asking people to print the illustration and pass it on to their GP, psychiatrist or appropriate healthcare professional or to pin it up in their local community or health centre. If you are a teacher of healthcare professionals, you may wish to use it as a teaching aid.

Who do I contact for more information?

You can contact the team via contact@mcpin.org.