A few years ago, while browsing Twitter, I came across a request for service user involvement in a research project. The McPin Foundation was seeking women of childbearing age with a history of severe mental illness to work on a study into women’s choices about medication use during pregnancy. The project interested me because I have long had an interest in maternal mental health. I also take antipsychotics and mood stabilisers for bipolar disorder so I understand the nature, purpose and impact of psychotropic drugs. I decided to apply despite having no experience in research and was delighted to be selected.
I knew nothing of the McPin Foundation and was pleasantly surprised to find that the study was to be a genuinely collaborative effort between McPin researchers, academics from UCL and four service users. Service user involvement took two forms. Firstly, as the driving force behind the study design and data collection on the qualitative arm of the project; and secondly as a Lived Experience Advisory Panel (LEAP) helping to “shine a light” on the findings of the quantitative arm of the study.
It was exciting to work on a project where my lived experience was accorded value and I felt that the service user sub-team was able to shift academics’ perceptions of how to view the data. For example, the academics had drawn up a list of adverse pregnancy and birth outcomes to record rates for women who take medication while pregnant compared to those who don’t. While the LEAP was also concerned about issues such as preterm birth, low birth weight and other obstetric outcomes, we were keen to provide the perspective of childbearing women with a severe mental illness. Adverse outcomes for this group might include admission to a mother and baby unit, detention under the Mental Health Act, difficulties in bonding with the baby, and so forth. My impression was that our viewpoint was a surprise to the academics, which meant we had done our job of introducing a new perspective on the work. This was highly important. Despite the centrality of our experiences to the project, I was keenly aware that there was a hierarchy at work, with team members employed as academics or researchers having a level of status and power we service users could not attain. I saw my role as wrestling some of that power back for the women participating in our study, and for the wider community of women service users.
On the qualitative side, we service users developed the study, writing the protocol and deciding on the approach. Drawing up the schedule of questions for the semi-structured interviews was fascinating. It was our chance to contribute views on what might be significant concerns for women having to make what were sometimes very difficult decisions about whether to take medication during pregnancy. We understood from our experience that a range of people, from psychiatrists to family members, have strong views over whether and when psychotropic medication should be used, and as a mother of two children, I was also acutely aware of the way in which people often feel able to offer unsolicited advice to pregnant women.
Peer to peer
It was decided that where possible data collection would be conducted by a pair of service user researchers. One person would conduct the interview and one was there for support and note taking. We met with a supervisor from McPin immediately after the interview for a debrief and after a period of reflection, we supplied field notes.
We were privileged to be invited into the women’s homes for the majority of the interviews. We were always clear from the outset that we had lived experience of a severe mental illness and built into the interview schedule a question about whether it had made a difference to the participant’s experience of the conversation knowing that we were also service users. The reaction to our disclosure was highly positive.
As collectors of the data, the service user researchers subsequently felt very protective of it. The intensity of the experiences shared by the participants, and our own lived experience, meant that a bond was forged with the women we worked with, even within the very short time it took to conduct the research interview. Later on, some tensions emerged about how the data was used and by who. As someone who is deeply embedded within the online mental health community, I found it difficult to be patient when it came to the dissemination of the findings. My natural impulse was to immediately share insights and their implications with as wide a spread of women and professionals as possible, and the process of writing up a study, submitting it to a journal and then going through the peer review process felt lengthy and cumbersome.
It is with great satisfaction, therefore, that I greet the publication of our paper. My hope is that it will give professionals some insight into the complex and nuanced decision-making that pregnant women must negotiate around psychotropic medication, and show how any decision is a crucible for the women’s concerns, hopes and fears.
Read the peer reviewed paper here. Download an illustration of the main messages below.
If the messages resonate with you, please consider printing the illustration and asking your local health centre to display it. If you are a teacher of practitioners in this field, please consider using it as a teaching aid.