At the start of the third year of the NIHR Applied Research Collaboration (ARC) South London’s research programme, it seems timely to share learning from the maternity and perinatal mental health theme’s work on PPIE.
We have a committed and vibrant PPIE Network comprising 35 service users, community members and charity representativeswho are invited to theme-wide advisory group meetings, seminars and training. The number has grown since year one, when the PPIE lead and researchers arranged two online events to kick-off our programme of work, setting out the theme’s focus and inviting community members to shape researchers’ thinking and awareness at the start of our journey.
The team feels that building relationships with people and communities is hugely important as it enables researchers to put the theme’s research aims into action. One of the midwife researchers, Zoe Vowles, describes this as: “Enabling us to develop an understanding of the questions and issues which are important to families, particularly in south-east London. Working together, we can design and carry out high-quality research, which focuses on understanding and improving areas of health and care which matter most to women and families.”
The maternity and perinatal mental health theme’s patient and public involvement aims are to create:
We have so far done less work on ‘engagement’ in the sense of sharing learning from research with communities. This will become a priority as the research programme progresses, and we will address this in a future blog. The planning phases of the research have focused on involvement in designing research and good ways to communicate during recruitment. Reviewing our ‘involvement’ progress and priorities, including at our annual PPIE Strategy Group meeting (16 November), we feel that our achievements to date have been consistent with the first two of these aims. Over the next three years, we need to do more to realise the third aim.
But how do PPIE Network members feel? This blog highlights the experiences and reflections of three individuals who have been active in the network, Zenab Barry, Rachael Buabeng and Vita Moltedo.
My experience of being a mother in a foreign country is the fundamental reason why I have been drawn into community research work.
Vita continues: "It all started when I read about a project in north London on maternity care through participatory appraisal, led by Emily Wood Ahmed, within the Better Births framework. What I thought would be answering some questions about my experience of birth resulted in a three-day training workshop on research methodology! I was one of 16 mothers from diverse backgrounds, with over 20 languages spoken between us. The workshop was followed by several months of participatory community work – going into the community; reaching out to individuals and organisations; structuring and organising meetings to find out about mothers’ and families’ experiences of antenatal, birth and postnatal care.”
Zenab Barry says: “My background is in political science and I am an international development specialist. When I had my children, I brought those perspectives to engaging with maternity services. I joined my local Maternity Voices Partnership (MVP), which I now co-chair."
As a Black Muslim woman, I felt it was important for my voice to be heard. I am a firm advocate of personalised care and empathetic social interactions; and I strongly believe that maternal health should be prioritised as it is the foundation of society.
What were your hopes when you first saw social media posts from Mary or heard about online events and then started interacting with the ARC’s maternity and perinatal mental health researchers?
For me as a Black British Ghanaian woman and chair of the Black and Black-mixed heritage Homerton Maternity Voices Partnership (MVP), my motivation was to raise issues of equality, and equity in research, and to highlight concerns of my community.
Zenab says: “The Covid-19 lockdown meant that meetings were moved online. Individuals from different parts of the world could all see each other from the comfort of their homes, with a click of a button. This became the new working norm. Mary invited me to join ARC South London. At first, I was not sure to what extent the work would be relevant to me, as my MVP is not located in south London. However, my first attendance was a defining moment. I truly felt that great efforts were being deployed to understand maternal inequalities and find ways to increase involvement and participation of service users from under-represented groups in research. This made me realise that the ARC's vision and objectives are in line with my passion for tackling inequalities.”
What aspects of involvement have you found particularly motivating or rewarding?
Zenab says: “At one PPIE Advisory Group meeting, I gave a presentation on strategies that could help increase the engagement / involvement of people from under-represented groups in maternity and perinatal mental health research.
‘I feel there is a genuine intention to reduce inequalities in maternity care. This is really motivating. Moreover, whenever I attend the meetings, I am given the opportunity to openly express myself. The space is psychologically safe, and I can relate to the topics being discussed. This rewarding and liberating practice is a way of inviting researchers to widen their critical thinking, broaden their perspectives and explore hitherto unthought-of or little-understood areas..”
Rachael says: “Involvement with the ARC researchers and wider network has led to more speaking engagements and I have been able to signpost other mums to take part in research as I have a lot of social media connections and the online network I founded, Mummy’s Day Out, has now grown to 8,000+ members.
“My involvement in the ARC and other work to amplify the voices of my mothers and community has been the catalyst in encouraging me to take an MA module in Perinatal Mental Health at Hull University to consolidate my knowledge and qualifications.
“I feel it has been a genuine two-way relationship with researchers. Through PPI it is possible to amplify the work that grassroots organisations like mine are doing. I value getting feedback from projects – knowing that our service user and community suggestions have been acknowledged – knowing the findings and that the project was successful.”
Although we feel that the overall experience has been very positive, no human enterprise is perfect, and there are some challenges that require attention to improve the involvement culture.
Vita says: “At times I have found it hard to navigate through acronyms, terminology, and ‘who is who’ in terms of groups, organisations and people. That, coupled with Covid anxieties and my dread of new ways of using technology, made it nothing short of terrifying to participate in the first online meetings. It has made me feel helpless, but also guilty for not being present and active enough. At the beginning I could not have contemplated being a facilitator or presenter.
“Time and again, I have heard myself praised by people for being capable, confident, clear and ultimately useful, yet it is only those words of encouragement – from Emily Wood Ahmed, Mary Newburn and Josephine Ocloo – and the feeling of being truly included that have given me the support (that I could not have done without) to continue to be present and active. That very feeling of inadequacy helps me understand and reach out to others, and in turn encourage, support and fight for and with them.”
Zenab says: “As we’ve discussed regularly at meetings, involving more people in research requires greater financial investment. Although I am remunerated for my efforts, more funding could help more people from under-represented communities become part of the process and add further value to research, especially by being more sensitive and inclusive for people experiencing exclusion, social taboos or deprivation. In addition, barriers such as lack of (or limited) access to online meeting platforms, limited skills and confidence, could all translate into fewer opportunities to engage in research. Going forward, I’d like to see additional thinking and planning about different practical ways of engaging with more people.”
Rachael says: “I realise now that my involvement in the ARC’s PPIE Network started from a place of privilege. As a ‘mumpreneur’, I work for myself at home, and do not need to use (expensive) childcare services. Therefore I was afforded time and opportunity to take part in Zoom calls. My passion and circumstances mean I can work to drive change through research with or without financial remuneration, for many others this is not the case.
“As the world went into Covid lockdowns everyone had to review how they were working. Joining meetings online has made this work so accessible. However, if I was required to come in physically to ARC meetings, I would no longer be able to come in on most occasions.”
Rachael says: “We would also like researchers to feedback to us more consistently and clearly the ways that they have been influenced by public involvement and service users’ experiences and views on research designs, and it was helpful at our theme’s 2021 PPIE Strategy Group meeting to discuss how this can be done.”
Our broader philosophy is that there should be PPIE benefits for women and families and personal learning and development of PPIE Network members, in line with our commitment to reciprocity. Here, we reflect on what the achievements have been and what involvement has meant for us:
The most rewarding aspect of it is the knowledge that this platform has allowed me to help improve the lives of service users. I find the possibility of positively impacting the lives of others and empowering people via research, albeit in an indirect way really fulfilling.
Zenab continues: “This journey has been filled with stimulating conversations and a humbling, broad latitude to dream about a more diverse and inclusive research community.
“Working with ARC South London has allowed me to collaborate with an inspiring group of individuals and helped to increase my confidence. It has opened opportunities for me to be involved in another research project at King's College: the Represent All Women Study.”
Rachael says: “I feel I have been able to share some of the views of the women I work with and engage some of my community contacts in research. In so doing, we are broadening involvement and creating a bridge between researchers and grassroots groups and the communities. There is a gap, and this needs to be acknowledged, articulated and understood. It has been rewarding to be a part of changing this.”
Vita says: “Since my first participatory appraisal project, I have attended various PPIE events run by ARC South London, first with the maternity and perinatal mental health theme, including planning and facilitating training on reaching diverse communities. In January, I joined the Covid-19 Public Research Panel chaired by Dr Ocloo, which has since become the ARC South London Public Research Panel, and I am a member of the ARC Involvement Advisory Group. I have progressed from being a member of the audience to sharing responsibility for leadership and organising.”
As a small group who have come together to reflect on how the last 18 months of working has unfolded for us, we generally feel positive. We feel that we can help to facilitate a process whereby researchers are more likely to tailor research designs and specific questions to ensure their research is ‘for’ – and sometimes ‘by’ – people experiencing social, cultural and economic disadvantage, and women of Black, Asian and minority ethnic heritage. However, this is made possible by those leaders and coordinators who work specifically from a community development, or involvement, perspective and these ‘soft’ skills are often overlooked and under acknowledged.
But we feel there is more work to be done, including improving feedback to those who provide advice from Black, Asian and minority ethnic community perspectives.
Online meetings can be convenient for home-based workers, mothers and other carers. It seems unlikely that we would have had so many talented and well-networked women able to find the time to join us regularly, if they had had to travel to King’s College London’s campus in Waterloo for meetings, adding perhaps two hours of travel time per meeting. Our PPIE Network members are all busy women with families, many managing jobs (paid or voluntary) and care of young children. Had we not had the meetings online, fewer would have attended and continuity in commitment would have been less. However, we are aware that online events, also exclude many people, such as those without the technology, time or the many other conditions that enable involvement, such as confidence, connections, social/language/technical support, trust in research and awareness of PPIE processes.
As well as continuing online advisory group meetings, we would like to see more opportunities for community-based involvement meetings and peer research. This will require additional funding: for the individuals taking part; for charities working with those experiencing deprivation and discrimination; and for intermediaries like us who, in our different ways, can help to make this possible.
We believe that insights into involvement-in-research experiences, emotional intelligence and cultural competency are important ingredients for better research and positive, reforming, policymaking. In fact, we feel these are key to ensuring a healthier, happier, less divided society.
Zenab Barry, Chair of Council at the National Maternity Voices, and Co-Chair Chelsea and Westminster Maternity Voices Partnership (MVP), a London NHS trust where continuity of carer is being provided and is part of an NIHR ARC South London research programme, and Service User Representative at the Chief Midwifery Officer's Research Strategic Advisory Board.
Rachael Buabeng, Multi-award-winning founder of Mummy’s Day Out, author, maternal health and Hyperemesis Gravidarum advocate (severe vomiting in pregnancy), and Co-chair of Homerton Black and Black-mixed heritage MVP.
Vita Moltedo, Participatory appraisal-trained peer researcher, mother, speaker of English as a second language, founder of Maternity Voices Matter network, member of the NIHR ARC South London Covid-19 Public Research Panel, now the Public Research Panel.
Mary Newburn, Patient and public involvement and engagement lead for the maternity and perinatal mental health research theme at NIHR ARC South London
ZB, RB and VM told their stories and shared reflections on PPIE in research and being part of the PPIE Network. MN posed the questions and wrote the first draft of the blog. We all contributed to the critical reflections, achievements and conclusion, and agreed the final version.