Women with two or more pre-existing mental or physical health conditions often have lots of appointments with different healthcare professionals during pregnancy and are at increased risk of poorer outcomes.
The MultIpLe Long-tErm conditions in pregnancy aNd experiences of mIdwifery cAre (MILLENIA) study has been established to address research gaps in this area, and patient and public involvement and engagement (PPIE) is playing a central role throughout.
PPIE groups are made up of individuals who are directly affected by the work being undertaken, who can use their lived experience to help researchers ensure the work being carried out is relevant, ethical and directly addressing important needs.
A diverse PPIE group made up of women from across the UK with lived experience of pregnancy with multiple health conditions is contributing to the continuous development of this study.
The group – comprising Esther Ehwenomare, Mary Hunter, Tannice Hemming, Debbie Rigby, Natalie Whyte and Afsheen are offered 16 hours of research training to support their involvement in this work, with their time and childcare costs covered to facilitate their participation.
I definitely feel like I learned a lot from the training and did enjoy it.
The group has made a significant impact on the study by contributing to the development of inclusion criteria, interview topic guides and participant-facing materials. One member, Esther, designed options for the study logo with the final version being agreed by the group (pictured below).
Taking part in the MILLENIA study has been an incredible opportunity to help shape midwifery services for those navigating childbirth while managing long-term health conditions. Our voices matter. We matter.
A novel aspect of this study is the inclusion of a PPIE mentor, who provides mentorship and supports capacity building for both the researcher and PPIE contributors. The mentor in this study is Mary Newburn, who has an extensive academic background in social science and public health.
Newburn also brings her rich experience as a leader in a national maternity charity that combines experience-led, woman- and parent-centred work with an active, critical focus on evidence and research.
My aim is for public involvement in research to be rewarding for all concerned, and to increase the relevance and usefulness of the studies. It’s a priority to build capacity in public involvement in research. As a mentor I aim to facilitate researchers to answer involvement questions and encourage them to follow - and develop - good practice on public involvement. I also support individuals who are new to public involvement roles. It’s a great way for us to learn together, sharing ideas, contacts and resources.
A multi-professional, multi-stakeholder Project Advisory Group has also been advising the team throughout their research. The group includes three charity partners – Action on Pre-eclampsia, The Maternal Mental Health Alliance and Social Action for Health – and members of the PPIE group.
In this space, a dialogue can be created between those with lived experience, the organisations representing them, maternity healthcare staff and other stakeholders guiding the study.
Working alongside the women in the PPIE group, Mary as our PPIE mentor, and our partner charities has been incredibly rewarding. Our discussions have reinforced to me the impact that midwifery care can have on women’s experiences, and why it is so important to understand how to provide this in the best way to improve care for women living with multiple health conditions. Their contributions have been vital to shaping the study so that it that truly reflects the needs and voices of those with lived experience. I'm grateful that the NIHR Doctoral Clinical Academic Fellowship is supporting me to develop my understanding, skills and opportunities for good practice in public involvement in research.
Read about the MILLENIA study
Read more about the maternity and perinatal research being carried our at ARC South London
Find out how you can get involved with our patient and public involvement work.