Mary Newburn PPI consultant and service user researcher shares her views on PPI in research in maternity services.
In my experience there can be quite a gulf between the concerns of researchers and those of women using the maternity services.
Women are often processing their own experiences long after giving birth, telling their story, making sense of what has happened to them. They may feel relieved and eager to move on, or they can be angry or feel guilty. Having a life-threatening illness or a long-term medical condition for example, is complicated with periods of crisis and dull days of coping; just getting through it 24 hours at a time. Having a baby has those elements too but maternity care is an especially wide aspect of health to explore. There is normal physiology to consider as well as medical emergencies and complex ill health. There is the growing, birthing, feeding and caring for a baby (or two). Different women and men feel passionate about different aspects of their own and their family’s journey.
The quality of maternity services is a human rights issue and a women’s issue. So important. Yet understandably, women often do not feel they have the time, energy or headspace to participate until their children are past the completely dependent stage. And then many will move on in their lives.
Researchers have funding deadlines to meet, ethics approval to secure, data to gather and papers to publish. Also, students to teach, teams to manage, lives to balance and careers to edge forwards. Patient and public involvement is necessary, important even, but a small part of the research process. Often funders will determine the research question or the kind of methodology expected. Yet women may have different research questions or priorities (University of Oxford/NIHR, 2017).
So there are many challenges to overcome. To make involvement effective I would suggest that researchers:
- follow or adapt a PPI process, such as the Oxford flowchart (p7, University of Oxford/NIHR, 2017) so there is a clear agreed commitment and a planning framework
- regularly reflect on and write up how well PPI activities have worked and how they have affected researchers and the study
- in maternity studies, aim for a mix of current or recent service users and older community advocates and service development workers, such as Maternity Voices Partnership members
- maintain the engagement of individuals throughout the project to demonstrate that they and their contribution is valued, even if research personnel change, as well as bring in new participants
- report on PPI in all academic or practice publications and publish a report for services users.
University of Oxford, National Institute for Health Research. Guide for researchers working with Patient and Public Involvement (PPI) Contributors. Version 6 2017