Making the invisible visible: Using lived experiences of severe mental illness around childbirth to co-produce tools for individualised pregnancy planning

End of project summary

Women with bipolar disorder or previous postpartum psychosis have a high risk of experiencing severe mental illness during the perinatal period. Women have reported difficulty in obtaining the information they need when planning and making decisions relating to pregnancy. 

The aim of this project was to develop a pregnancy planning guide for women with bipolar disorder and / or previous postpartum psychosis. The specific aims were to determine the following: (i) the critical components of the guide, (ii) its acceptability, and (iii) the feasibility of a larger scale Randomised Controlled Trial (RCT) of the guide. 

The process followed Medical Research Council (MRC) Guidance on developing and evaluating complex interventions (Craig et al. 2008). A review of online information available to women, along with qualitative interviews with women with lived experience of bipolar disorder and / or postpartum psychosis (n=8), and professionals involved in their care (n=14), informed the initial prototype of the guide. Qualitative interviews were analysed using a process of reflexive thematic analysis (Braun and Clarke 2006; Braun and Clarke 2019). The initial prototype of the guide was subject to two stages of piloting (pilot one: nine participants; pilot two: eight participants) and refined at each stage based on qualitative and quantitative feedback. 

The final prototype of the guide was an 88-page loose leaf guide with sections for women to personalise. Overall, the guide was acceptable to women. Decisional conflict scores were reduced (representing less uncertainty) after using the guide compared to before. Participant data on mood symptoms showed no clear negative impact from using the guide. The guide appeared best suited to those who had already received specialist professional input as for other women the guide may seem overwhelming. 

In conclusion, the current iteration of the guide may be best used to complement care within specialist perinatal mental health contexts. Prior to conducting a larger scale RCT of its use, further development work is recommended, for example, this could involve further tailoring of the guide and trialling its use alongside input from professionals.