ERicar: Co-creating an antenatal care information resource with Czech-Slovak Roma women

ERicar was an interdisciplinary project that combined participatory design-led inquiry together with applied health research using qualitative methods.

Introduction

The research was carried out between November 2022 and June 2023 by Dr Mabel Lie (Population Health Sciences Institute) in collaboration with Dr Caroline Claisse (Open Lab). It was funded by the Medical Research Council’s (MRC) Public Health Intervention Development Grant (PHIND). One of its aims is to support early-stage development of health solutions, particularly those that address public health challenges through co-production with the public.

The idea for the project was informed by Lie’s long-term interest in race equality in the healthcare context, in particular reproductive health, and participatory methods. This was further developed with the involvement of Claisse and Zaneta Karchnakova (Roma community facilitator and peer researcher). Lie, Claisse and Karchnakova brainstormed potential collaboration, which led to the delivery of two co-creation sessions funded by Newcastle University Pioneer Awards.

These sessions enabled us to build rapport with a group of Roma women whilst learning about their migration stories to the UK (see project report). Insights from this engagement informed the more substantive MRC-funded ERicar project to explore women’s experiences of healthcare services for pregnancy and childbirth, and to use co-creation as a way of generating understandings of their needs and preferences for service design and information resources.

The project was supported by an expert advisory panel, which consisted of academics with expertise ranging from Design, Public Health, Geography and Critical Race Theory, as well as stakeholders from Statutory and Voluntary sectors.

Background: Why was this research needed?

Migrant women in the UK experience inequalities in health and wellbeing including in their experiences of pregnancy and childbirth. Roma women from Central and Eastern Europe suffer discrimination of different forms in their original countries which influence their engagement with public services in the UK. Further, like other migrant women, they are often unaccustomed to the way health services work in the UK.

Language and cultural barriers, racial bias and discrimination also exist, leading to hesitancy in accessing pregnancy support services. This study aimed to address these issues by co-creating an information resource with a group of these women, through understanding their needs and preferences regarding existing antenatal care information, to inform design considerations for an evolving prototype of a community information resource.

Co-Creation Engagement

We conducted eight workshops, each lasting one to two hours, over a period of fifteen weeks. The first three workshops concentrated on the women describing their pregnancy journeys, with the fourth workshop summarising our findings and gathering further feedback from them through the co-creation of a pregnancy map. This was followed by two workshops to explore publicly available resources and the potential of digital technologies for supporting women’s pregnancy journey. In the last two workshops, we discussed ideas for an antenatal care information resource and worked together to co-create a prototype.

Design output

The design output from the project is a zine (small booklet) designed from ideas and artwork contributed by the women at the workshops, focusing on the mental health needs of Roma women through their pregnancy journey. This process was scaffolded by illustrative and narrative prompts to help women channel their ideas and contributions. The zine serves as a tangible, portable, conveniently sized item to be carried around and shared, and referred to in time of need. Embedded in the zine are weblinks to information for pregnancy support, which the women highlighted as important. The zine, translated into Czech, is being made into a digital resource and publicised through a community event and a dedicated Facebook page for Czech-Slovak Roma. It is an attractive way to reach seldom-heard groups who tend not to access public health information and support, but do depend on family relations, cultural norms, and internet searches. The information (i.e. weblinks) provided in the zine could be updated, but the messages from the women have longevity.

Future work

Lie and Claisse are working on developing the zine into a digital and printable resource to be tested in community settings and clinical practice. As it has been co-created with women from the Roma community, this would encourage better engagement with health service provision, breaking down some of the barriers that may exist for a variety of reasons.

Future work ideas include similar engagement with other women from minority groups to test how the co-creative approach and outputs may be adapted and tailored to different groups. We aim to work in closer partnership with health service providers and communities to access funding for this stage of our project development.

You can read more about this work in the main project report.

Project outputs

Project reports

ERicar main report: https://doi.org/10.57711/s7sn-q130

Roma women’s migration stories report: https://doi.org/10.57711/0ksn-wv76

Publications and conference presentations

• Claisse, C., Durrant, A. C. & Lie, M. (2024). Understanding Antenatal Care Needs through Co-Creation with Roma Women to Inform the Design of mHealth Technologies. In Proceedings of the 2024 CHI Conference on Human Factors in Computing Systems. https://doi.org/10.1145/3613904.3642584.
• Lie, M., & Claisse, C. (2023). ERicar: engaging Czech-Slovak Roma women in the co-creation of an antenatal care information resource. Presentation at the North East North Cumbria Women' Health Conference, 19th October, Sunderland Stadium of Light.
• Lie, M., & Claisse, C.  (2023). ERicar: Engaging Roma women in the co-creation of an antenatal care information resource. Poster presented at the British Sociological Association, Medical Sociology Group Conference, 13-15th Sept, University of Sussex, Brighton. https://doi.org/10.57711/z325-ce80
• Lie, M., & Claisse, C. (2024). Engaging Czech-Slovak Roma women in the co-creation of an antenatal care information resource. Poster presented at the European Public Health Conference, The Convention Centre, Dublin, 8-11 Nov 2023. https://doi.org/10.57711/jg4z-4742

Dissemination activities

• Watch the ERicar Webinar
• Read the blog about ERicar