Co-pro example: a health literacy journey
Yesmin Begum shares her insights into the Health Literacy Project that she is involved in as a member of the Katie’s Team, a women’s health advocacy group in London.
In the healthcare sector, assumptions often cloud the true needs and desires of the public. At Katie's Team, we firmly believe that no one understands a situation better than those who have lived through it. This belief became the driving force behind our Health Literacy Project, focusing on the unique challenges faced by pregnant women from ethnic minorities in Tower Hamlets, mainly from Bangladesh.
At Katie’s Team, we learned that pregnant women from ethnic minorities carried the weight of language barriers and found themselves struggling to comprehend the crucial information provided during antenatal appointments. This is a critical clinical risk as it affects not only the woman’s health but that of her baby.
Before delving into our project's specifics, let's understand the essence of health literacy. It's the ability to get, read, understand, and use healthcare information to one's advantage. Health literacy is so important because it enables individuals to understand their practitioners, make informed decisions, and effectively communicate with healthcare providers.
Our commitment to co-production stems from the belief that involving the community, especially those with lived experiences (Experts By Experience), ensures relevant, practical and effective outcomes. This collaborative approach promotes ownership, empowerment, equity, and equality within the community.
In the diverse community of Tower Hamlets, over two-thirds of the population belong to minority ethnic groups. For pregnant women struggling with language barriers, our project aims to bridge the gap. The goal is not just to fix immediate challenges but to build a stronger and more informed community.
A holistic approach
Our goal is clear - create a simple program to help pregnant women who don't speak English well. This program, spanning six weeks, covers everything from understanding health to postnatal self-care. The small group setting ensures personalized attention, and collaboration with healthcare professionals and English teachers ensures the program meets specific community needs.
Continuous improvement and future planning
Our journey doesn't end with a program; it's a continuous process of improvement. Regular feedback from women throughout the project, focus groups, and check-ins at the end of the program ensure adaptability. We hope to not just help for a little while but seek more support to expand our impact. The goal is to understand health better and keep improving how we help, ensuring a sustained positive impact on the community's health.
Open and inclusive communication
We established ground rules with the ladies that promoted active listening and respect for diverse opinions. This created a safe space for collaboration. We made sure that we encouraged an open and inclusive communication culture by encouraging participants to express their thoughts, ideas, and concerns without fear of judgment.
Accessibility and language considerations
We made sure that information was accessible to all participants. This includes considering different literacy levels, and language preferences. We hired interpreters to ensure that language was not a barrier to effective communication.
Building trust and relationships
As trust is crucial for effective co-production which requires time and effort, we demonstrated transparency, honesty, and a genuine commitment to listen attentively and address the concerns and needs of all participants together with them.
Diverse representation
We gathered a diverse core team that included individual professionals (such as an obstetrician, an interpreter, an ESOL teacher, students from QMUL, a Community Organiser, etc) from different backgrounds, experiences, and perspectives. We then searched for women who were affected by the issue at hand. Having a diverse representation brings such richness of perspectives.
Acknowledging Power Dynamics
We tried to be mindful of power dynamics during focus groups by doing more listening than talking to ensure that everyone felt comfortable to contribute, regardless of their position or background. We let the women lead the conversation rather than demanding them to follow our planned agenda. This approach helped us to understand the priorities these women had, and the women felt more valued.
Feedback
We established feedback opportunities throughout the co-production process, especially, after each focus group so that we may learn from our mistakes and rectify them for next time. Women felt very content as we regularly checked in with them to assess their satisfaction, address concerns, and adapt strategies accordingly. We learned that there is always room for improvement, if you want to improve.
Clear communication
We tried to clearly communicate the goals and expected outcomes of the co-production process. This ensured that everyone was working towards a shared vision and understood the purpose of their contributions.
Remunerations and acknowledgment
A fine approach to valuing and appreciating someone’s time and expertise was by remunerating them adequately, and that is what we did. We paid all contributors £50 in cash because that is how they wished to be remunerated for two hours of their precious time.
Assembling a diverse team
Our approach was simple yet profound. We assembled a diverse group of women interested in the Health Literacy concept from the Katie’s Team, representing various occupations in the health sector. This mixed bag included an obstetrician, university students, a community organizer, an ESOL teacher, and other healthcare workers. The goal was to capture a broad spectrum of perspectives and insights, but importantly, we had women who had the raw experience themselves. (I also suffered while in a healthcare setting during my first labour along with others.)
The first focus group
Our first focus group aimed to unravel the pregnancy experiences of these women. From finding a suitable venue to providing healthy refreshments and remunerating the participants for their time. Every detail was meticulously considered. Structured yet open-ended, the session allowed the women to lead discussions on what they deemed important. The journey wasn't without its challenges. Transcribing recorded discussions from Sylheti to English took months. However, the payoff was immense. The friendly facilitators, who understood the nuances of the conversations, created an environment where women felt heard. This not only resulted in a successful first session but also sparked a desire among participants to engage in more conversations.
One big lesson we learned from the first focus group was that women came with babies and their toddlers, something we did not anticipate at all. With the babies came pushchairs. In a medium-sized staffroom at the hospital, we somehow managed to park all the pushchairs and make space for the little ones, too. So, for the second focus group, we booked a large hall, where 10 pushchairs could park, and we also had tables with colouring pens and toys for the toddlers to stay occupied while their mums participated in the focus group. And, this time round, there was even enough space for the women to breastfeed in comfort.
The second focus group
Building on the success of the first focus group, we called the women for a second session. This time, our focus shifted to addressing language barriers and the 6-week course. The aim was clear: break down the barriers hindering these women from fully understanding and participating in their healthcare journey.
The women distinctly shared that they wanted health literacy classes. They suggested that these classes were run weekly and for two hours in the morning between 10 am to 12 pm. They were very specific about what they wanted because of the school runs and domestic chores.
They chose the topics for each week and explained how they wanted the classes to be delivered. They also suggested having models of the human anatomy in class so that they could learn the names of parts of the female body, especially the anatomy during pregnancy. They wanted to know the names of conditions in pregnancy such as ‘gestational diabetes’, ‘preeclampsia’, ‘hyperemesis’, and so forth.
The final course reflects these discussions well:
• Week 1 Introduction to Pregnancy
• Week 2 Getting to Know Your Body
• Week 3 Vomiting in Pregnancy
• Week 4 Gestational Diabetes Mellitus
• Week 5 Labour and Childbirth
• Week 6 Post-Natal Care
These topics were all chosen by the contributors. This made the programme more relevant highlighting issues that were considered priorities by the service users.
As usual, everything was being recorded while the women spoke in their native Sylheti language, which was later transcribed into English. It was a very wholesome session with lots of ideas to work from.
Co-production is not just a concept; it's a philosophy Katie's Team lives by. By dispelling assumptions and recognising the value of personal experiences, we aim to make pregnant women in Tower Hamlets, regardless of their language, feel confident and informed about their health. It's not just about helping one person; it's about making our entire community stronger.
Yesmin is a UCL Co-Production Collective co-producer and a winner of the Coronation Champions Award 2023. She wears many hats and sits on various steering groups holding many roles of which an NHS ELFT Public Governor is one.