Pregnancy and medication choices: new research published
by Harminder Kaur
Many women with severe mental illness take psychotropic medication. This can put them in a difficult situation if they become pregnant, or wish to become pregnant, as there are concerns about the possible effects of these medications on unborn children. Until now there has been a lack of evidence about the risks to the unborn child, putting the women and their healthcare professionals in a quandary. How do you weigh up the potential benefit to a woman’s mental health of taking medication, against the potential risks of the medication to the unborn child? In short, a decision has to be made with very high stakes, with little or no information to make it.
In March, a team from UCL led by Professor Peterson published the results of a much needed research project which investigated the risks and benefits of taking psychotropic medication during pregnancy.
The mental health website The Mental Elf recently published a clear and useful summary of the research study focusing on the risks of psychotropic medication to the unborn child.
Peterson et al. found that there is no increased risk of major congenital malformations for the babies of women taking antipsychotics. However, there is an increased risk of major congenital malformation, neurodevelopmental and behavioural disorders in women taking anticonvulsant mood stabilisers, in particular sodium valproate.
In 2013/2014 I had the privilege of working with researchers at the McPin Foundation and UCL on this project as a member of a Lived Experience Advisory Panel. The panel was made up of myself and three other women with experience of severe mental illness who all had experience of making or considering decisions about using psychotropic medicines in pregnancy. We were also recruited as peer researchers and led on the design of a related qualitative study. Given the lack of evidence about the effects of psychotropic medication on the unborn child, we decided it would be productive to look ourselves at how women make these high stake decisions about use of psychotropic medication during pregnancy.
We found that most of the women said that their healthcare professionals were not able to provide sufficient information about the effects of psychotropic medication during pregnancy for an informed decision to be made. This led women to seek to obtain information on their own initiative, principally from the internet. However, this was unsatisfactory as online information can be contradictory and unclear. This meant that the women had to depend on past experience and common sense to make decisions. The women had to take a gamble with their own health or the health of their unborn child. To read more click here.
We also found that agency or lack of agency was an important feature in each woman’s story. We observed significant variation in the way decisions were reached and were able to classify them as predominately mother-led, predominately practitioner-led, or collaboratively reached. The way decisions were reached was affected by features such as the woman’s sense of self-identity, her experiences of mental health problems, and characteristics of the service provided and support offered. We are still working on a publication that will explore these themes in more detail.
Working on the study was exhilarating, challenging, and stimulating. Positives were the sheer pleasure of being taken out of my normal life periodically and being trained in research skills by senior researchers. Other positives were being valued and treated as if my views mattered after going through a dehumanising psychiatric system. Challenges including learning about statistics after a 5am start to get to the McPin offices, and facing up to the fact that my brain doesn’t work as well as it did before the onset of schizophrenia. Thinking on my feet was a particular challenge.
Regarding the interviews, the experience of interviewing the women was incredibly moving and the interviews have stayed with me for the two years that have passed since they were conducted. One woman I interviewed previously lost a child through stillbirth. She was so profoundly affected by the experience that she developed grief induced psychosis. With her most recent pregnancy she was determined not to do anything that might jeopardise her unborn child. This informed her choice not to take psychotropic medication during pregnancy, against medical advice. At the time of interview mother and child were both well.
Another interview was equally moving. The woman came off medication after being given the option by her treatment team. She subsequently had a psychotic episode and lost custody of her child. Listening to the woman share her story was emotional. However, there was something cathartic about the interview in that it gave the woman space to take stock and tell her story. I felt honoured to bear witness to her, and to the other women we interviewed.
Thinking ahead, there is a lot of scope to develop this work. The study into decision making was quite small as only twelve women were interviewed. My hope is that a larger qualitative study might be conducted, perhaps one that has a greater geographical spread and diversity of participants. Several case studies were written up from the existing study data. If a larger study was embarked upon, it would be good to produce a bank of case studies about decision-making and consequences for women taking psychotropic medication who are, or wish to become, pregnant. This is a format that can accommodate quite complex information in a style that is easily accessible to women and their families, who are considering similar, difficult decisions.
I would also like to see healthcare professionals involved in future qualitative work in order to understand their experiences and what the challenges are as they see it. Do they feel able to supply good support and information, or are they frustrated by the situation? How do they envisage an ideal process for supporting women and their families in making these decisions? It would also be useful to find out how families participate in the decision-making process and whether the dominance of a traditional doctor-patient model of medical interaction has the effect of excluding other family members from participating. Finally, I would like to see interviews with women who have chosen not to have children due to their mental illness or medication.