Patient and public involvement or #PPI is defined by INVOLVE (part of, and funded by, the National Institute for Health Research) as:
“Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.”
In our latest publication, we explain how patient and public involvement works in maternity service research. Here, we asked childbearing women about their experiences in relation to the workplace wellbeing of midwives. We also asked them how they felt about new research looking to create and test an online intervention designed to support midwives. We did this via a discussion group, where participants were offered refreshments and remuneration for their time. Our aim was to answer the following questions:
- What are the perceptions of new mothers in relation to the barriers to receiving high quality maternity care?
- What are the perceptions of new mothers in relation to the psychological wellbeing of midwives working in maternity services?
- What are the perceptions of new mothers in relation to a research proposal outlining the development and evaluation of an online intervention designed to support midwives in work-related psychological distress?
These PPI activities helped us as researchers to do the following:
- Better understand this research problem from the perspectives of new mothers
- Validate the direction of future research plans
- Explore new areas for data collection based on what really mattered to mothers and their babies
- Improve upon the design of the proposed online intervention based on what really mattered to mothers and babies.
You can read our full methodology via the linked citation below:
Pezaro, Sally, Gemma Pearce, and Elizabeth Bailey. “Childbearing women’s experiences of midwives’ workplace distress: Patient and public involvement.” British Journal of Midwifery 26.10 (2018): 659-669.
This article was launched in the October edition of the British Journal of Midwifery at the Royal College of Midwives annual conference in 2018 .
Put simply, the findings in relation to what participants said were analysed thematically and turned into meaningful insights or ‘PPI coutcomes’. In this sense, we used a co-design approach to inform the direction of new research. How did this work exactly? See figure below.
Initially, we considered that it may have been useful to include midwives in PPI activities, as they were to be the intended recipients of the intervention proposed. However, INVOLVE briefing notes state that:
“When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.”
A such, we could not include midwives in these PPI activities due to them have a ‘professional role in health and social care services’. Nevertheless, as midwives were the intended end users and direct beneficiary of the intervention proposed, we argued that they should “not necessarily be excluded from PPI activities simply because they treat patients”. This debate lends itself to further academic discussion and we welcome ideas on this going forward.
Both national and international strategies and frameworks relating to healthcare services tend to focus on putting the care and safety of patients first , yet these findings suggest that to deliver the best care to new mothers effectively, the care of the midwife must equally be prioritised. As such, we now intend to seek further funding to continue this work and secure excellence in maternity care.
If you would like to follow the progress of work going forward..
Follow me via ; The Academic Midwife; This blog
Until next time…Look after yourselves and each other 💚💙💜❤
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So how will we use this information? We will use your votes to ensure that the things that matter most to you are included within two international surveys. Once these surveys have been designed, we will be submitting our research plan to the ethics committee at Coventry University for approval. Once ethical approval has been granted, these surveys will be opening very soon to both maternity staff and those childbearing with hEDS/HSD. We hope that the results of these surveys will give us an overall picture in relation to how both maternity staff and childbearing women with hEDS/HSD may be better supported, so please do look out for them and share them where you can.
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