Mother knows best: Developing a consumer led, evidence informed, research agenda for maternity care

The principles of evidence-based practice and involvement of consumers in healthcare are well established. However, consumers are rarely involved in decisions about what evidence is actually required and this may result in a mismatch between research undertaken and issues of importance to those who use the health services. This may be particularly evident in maternity care where disease focused research funding priorities may not address aspects of care which are important to the majority of women. Working with service users to generate possible future research questions may facilitate more women centred research. Aim 1. to work with groups of mothers to develop questions for research that reflect issues of importance to them; 2. to make these questions widely available to facilitate the development of women centred maternity care research. Method: the project used a three stage participatory approach in a diverse sample of localities across Scotland. Twelve pre-existing, community-based groups of maternity service users participated with between 8 and 20 mothers in each. Each group met twice. At the first meeting group discussion identified topics and questions. A rapid literature review of each topic was conducted and used to develop a document summarising evidence to facilitate discussion at the second meeting. The group then prioritised topic areas and questions using a modified Nominal Group Technique. Findings: analysis identified key topics and questions which were raised and prioritised by a number of the groups; a ‘top ten' list of priority topics was readily identified, these included aspects of postnatal care, antenatal care, communication and information giving and risk. Approximately 200 individual questions were asked by women, for example: What is the impact of a bad birth experience on postnatal physical and psychological health? What is the best way of providing antenatal classes/preparation classes? What is the effect of women feeling not listened to in labour? How can fathers be given effective preparation for coping with labour and birth and supporting their partner? Discussion: this project demonstrates that women are well able to articulate researchable questions when given the opportunity and support to do so. Although a wide range of topics and questions were identified there were remarkable areas of consensus and clear areas of priority for women, these should be used to inform development of women centred research