All too often, in maternity research (and care at times), we hear the phrases ‘hard to reach’ (used by ill-informed policy-makers, researchers or healthcare professionals) and ‘not listened to’ (used by service users). However, in these phrases there is an assumption that underrepresented people are ‘hard to reach’ and the reality (evidenced by research) shows that people are not ‘hard to reach’; rather, it’s the approach that needs to change) and the fact that this same group of people are not being listened to, affects research. Yet, it is also one of the reasons why more efforts should be deployed in this area in order to uncover facts, reduce information asymmetries and increase effective involvement of seldom heard groups in research—to help improve maternal outcomes.
It was precisely our need to understand the perspectives of service users regarding their respective maternal experiences that led us to organise and hold a listening event in Lambeth. Using a participatory research appraisal approach, we had the privilege to meet with thirteen women from diverse backgrounds, who kindly shared their respective maternal experiences (antenatal and postnatal).
We hope that the findings of this really successful listening event—within the community—will help inform research, and that they will be widely disseminated.
Photo: Members of the maternity and perinatal mental health theme at the event (From left: Abigail Easter, Zahra Khan, Zenab Barry, Rachael Buabeng, Kaat De Backer, Hannah Rayment-Jones, Mary Newburn, Zoe Vowles and Vita Moltedo)
It is human nature to be more relaxed and at ease when talking to someone we can relate to, at a familiar place and within a relaxed environment. As opposed to engaging in a conversation in a different setting (hospital, university or children’s centre) and with healthcare professionals wearing uniforms (and surrounded with medical apparatuses) or a group of researchers asking questions in an interview style.
Having understood this from our personal experiences, as well as from our previous involvement in research, we decided to ensure that the listening event was planned and conducted in a way that would be conducive to natural expressions of feelings—within a warm, caring and relatable environment. We felt that that approach would enable participants to freely share their opinions and personal experiences; and we were really pleased when we noticed that, during the event itself, women felt that they could trust us enough to share perspectives and experiences that they had not yet been able to discuss with their healthcare professionals.
I wish it was something that all new parents got a chance to do. It was only afterwards that I realised I had never spoken to anyone about some of these questions e.g. the first GP appointment after finding out you’re pregnant. It was so nice to hear from another mum who felt exactly like me
A group of researchers (including peer researchers), midwives and a patient and public involvement (PPI) lead, discussed the aims and objectives of this listening event and planned the different activities. The event took months to plan. Progress meetings were held regularly and a day trip was undertaken in order to physically inspect the venue (Myatts Field North Centre) and make all necessary arrangements. The services of a local catering business were sought (Healthy Living Platform) and food was selected based on specific dietary needs—as a way of ensuring that diversity and inclusivity were respected. A crèche was made available and two experienced childminders were on-site for the duration of the event. This meant that women could choose to allow their children to be cared for by these women (in a nearby room), so they could fully engage in the discussions. Mothers with newborns (or breastfeeding babies) also had the option of staying with their children or using a partial childminder service (bringing their children back into the room where they were, as often as needed).
Four main activities were employed during the event: washing line, people and places, spider diagram and beany counter.
After informal individual courteous greetings, a warm group introduction and a great icebreaker (which stressed the importance of the validity of differences, as well as the noteworthiness of commonality of perspectives), the event commenced with the washing line activity. The main aim of this activity was to gain an understanding of different experiences of stages of the maternal journey (pregnancy, labour, birth and postnatal—including feeding), in sequential steps, using “happy”, “sad” or “neither happy nor sad—just okay” faces (or smileys). Women spoke with researchers and, using pegs, they placed particular feelings next to the smiley that they believed corresponded to their different experiences. Topics such as pregnancy, miscarriages, birth, breastfeeding support, rapport with healthcare professionals and mental health were discussed.
The activities that were done made me think...It was good learning from others and sharing…So it was a really good event
For the people and places activity, the women were divided into four groups. Each group of women and researchers sat around a table where different words and pictures were placed. This activity consisted of trying to understand the nature and levels of support received by these service users during their maternity experience, without posing direct questions and letting them communicate to us how the specific words or pictures that they picked related to their respective experiences. We found out that while some felt that the support that they received from their healthcare professionals was adequate, others shared that the support offered by members of their social network was more valuable because it met their needs.
Also, while some women felt that they were not listened to by their midwives or GPs, others stated that the care received during their maternal journey was satisfactory—it even exceeded their expectations at times. Furthermore, the correlation between trust and fear was also exemplified when it was mentioned that, owing to their fear of social services, some women felt that they could not really disclose the nature of their mental health. In other words, even when they experienced postnatal depression, they felt unable to share this with their healthcare professionals—as they feared that they would be deemed unfit for parenting and that their babies could be taken away. As Mary Newburn, ARC South London PPIE lead put it, one of the key themes that was picked up while conducting this activity was the fact that
People matter more than places.
The spider diagram activity was an opportunity to further explore different topics and find out from the women what solutions could be proposed. For this activity, groups were asked the following questions:
Some of the themes that emerged while discussing these questions were (and the list is not exhaustive):
The last activity, the beanie counter, was undertaken just as lunch was being served. So women placed stickers on the items of all spider diagrams that they felt were important to them; and then headed straight for lunch—which was also an opportunity to engage in continuous informal (but highly important) chats with other mothers or researchers.
This listening event has not only been a pleasure to conduct, but it has also allowed us to either confirm assumptions and / or gain new perspectives.
We have learnt that as humans, we need to be just that when we are conducting research. There is no need to overcomplicate things or impose upon ourselves (and others) rigid protocols. Flexibility is important and, oftentimes, we just need to go with the flow. As long as health and safety (including a safe psychological space) are taken into account, a simple smile, human warmth and a willingness to truly listen and engage with others, can greatly enhance research activities. The importance of being natural cannot be over-emphasised.
This event has also taught us that underrepresented groups are not hard to reach. Rather, they actually want to be involved in research and share their perspectives. However, for that to happen, the approach needs to be right for them and relevant to them.
A listening event within the community is worth conducting. We develop human connections when we talk to people in an environment where diversity and inclusion, safety and trust are key enablers of natural conversations. It is worth finding the right time and space to listen to women share their experiences—especially when the phrases “hard to reach” and “and not listened to” are still being heard or read and widely used on different platforms and in the media.
We found that research conducted in this way enabled us to get more information than we even anticipated and it is a pleasure to note that we could be trusted enough to be provided with such a wealth of information. Undertaking more research of this kind could greatly help understand the perspectives of women from diverse backgrounds, who are often not heard.
We found that research conducted in this way enabled us to get more information than we even anticipated and it is a pleasure to note that we could be trusted enough to be provided with such a wealth of information.
Undertaking more research of this kind could greatly help understand the perspectives of women from diverse backgrounds, who are often not heard. The findings could help policy-makers enact policies that are relevant to (and that champion) the aspirations of service users. It could also help healthcare professionals develop services that respond to the needs of service users. Therefore, more funding should be allocated to relevant bodies and or institutions to enable them to listen to service users within their communities.
With that being said, our key recommendations are: be human, be natural, be pragmatic, listen, listen, listen and go with the flow.
It was great to meet other mothers and chat through our pregnancy and labour experiences. I really hope our suggestions help improve services for others in the future
Thank you for organizing this fantastic event. It was a pleasure to meet everyone and be able to share experiences
I had a great day, the activities were engaging and reflecting. I liked the fact that we were able to talk about our experiences right from the beginning of pregnancy till that very moment, both the good and bad and also show appreciation
A fabulous event. It was so nice to meet other mums, get to share our experiences and to see that we are not alone. It was nice to feel that our ideas and suggestion were listened to and hopefully it will help the system and process to improve for mums in the future
During one of the activities I took a step back to take a few photos of the event. As I stood still and focused, what I saw was a group of women working together for a common cause. At that moment it was impossible to distinguish between researchers and participants. Despite the joyful noisiness, there was a trusting and calm atmosphere where everyone was completely at ease
Zenab Barry is a political scientist and an international development specialist. She is a director at the National Maternity Voices, a PPIE member at the NIHR’s Funding Committee, an NHS peer leader, a PPI contributor at THIS Institute (University of Cambridge), and a strategic adviser for NIHR Applied Research Collaboration (ARC) South London’s maternity and perinatal mental health research theme (King’s College London).
We would like to express our heartfelt gratitude to all the women (and their children) who made this listening event a priority. Their presence, active engagement and perspectives shared made this event truly memorable. We would also like to thank our funders and all local organisations involved in making this event possible. Professor Jane Sandall’s support and guidance have been invaluable and we are all really thankful. Her passion for maternal equity is greatly appreciated.
Researchers, peer researchers and PPIE lead (Abigail Easter, Hannah Rayment-Jones, Kaat De Backer, Mary Newburn, Rachael Buabeng, Vita Moltedo, Zahra Khan, Zenab Barry and Zoe Vowles) employed positive energy and great efforts before, during and after the event. They co-designed and co-facilitated the project.
Lastly (and definitely not the least), my writing and publishing of this blog would not have been possible without editorial support and advice from the communications team: Michele Harris-Tafri and Nick Sarson and from Savitri Hensman, patient, service and ARC South London's patient, service user, carer and public involvement coordinator.