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How was it for you? Community involvement in ARC South London’s maternity research: some unexpected benefits of Covid-19 ways of working

Zenab Barry, Rachael Buabeng, Vita Moltedo and Mary Newburn collaborate to share experiences and reflections on the ARC South London maternity and perinatal mental health research theme’s Patient and Public Involvement and Engagement (PPIE) Network.

Zenab Barry Chair of Council, National Maternity Voices; Co-Chair, Chelsea & Westminster MVP

Rachael Buabeng Founder, Mummy’s Day Out; Co-chair, Homerton Black & Black-mixed heritage MVP

Vita Moltedo PA-trained peer researcher; founder, Maternity Voices Matter; ARC South London Public Research Panel

Mary Newburn PPIE lead, maternity and perinatal mental health theme, NIHR ARC South London

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 representatives who 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.

One of the midwife researchers, Zoe Vowles, describes the importance of relationship-building 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.”

Aims of PPIE within our maternity and perinatal mental health theme

The maternity and perinatal mental health theme’s patient and public involvement aims are to create:

Community voices

But how do PPIE Network members feel? This blog highlights the experiences and reflections of three individuals who have been active in the network.

“My experience of being a mother in a foreign country is the fundamental reason why I have been drawn into community research work. It all started when I read about a project in north London on maternity care through participatory appraisal… 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.”

Vita Moltedo — Founder, Maternity Voices Matter

“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.”

Zenab Barry — Chair of Council, National Maternity Voices

Hopes

What were your hopes when you first heard about 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.”

Rachael Buabeng

“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… 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.”

Zenab Barry

Positive experiences

What aspects of involvement have you found particularly motivating or rewarding?

“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… 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.”

Zenab Barry

“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… 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.”

Rachael Buabeng

Critical reflections

Although we feel that the overall experience has been very positive, there are some challenges that require attention to improve the involvement culture.

Providing support and being aware of barriers

“At times I have found it hard to navigate through acronyms, terminology, and ‘who is who’… 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… 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 to continue to be present and active.”

Vita Moltedo

Adequate funding and going out to communities

“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… 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.”

Zenab Barry

“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. If I was required to come in physically to ARC meetings, I would no longer be able to come in on most occasions.”

Rachael Buabeng

Feedback

“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.”

Rachael Buabeng

Achievements

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… 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.”

Zenab Barry

“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.”

Rachael Buabeng

“Since my first participatory appraisal project, I have attended various PPIE events run by ARC South London… including planning and facilitating training on reaching diverse communities. I have progressed from being a member of the audience to sharing responsibility for leadership and organising.”

Vita Moltedo

Conclusion

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.

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. However, we are aware that online events also exclude many people, such as those without the technology, time, confidence, connections, social/language/technical support, trust in research and awareness of PPIE processes.

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.

Related links

• →
  Engaging local women in maternity research during the Covid-19 pandemic — the start of the journey
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  Reciprocity between researchers and communities – What does positive, mutual exchange look like?
• →
  Report: Involving diverse communities in research — participatory appraisal training report (October 2021)
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  Patient and public involvement and engagement in maternity and perinatal mental health at ARC South London

Original source: arc-sl.nihr.ac.uk — NIHR ARC South London legacy content archived May 2026.