Engaging Roma women in the co-design of an antenatal care information resource (ERicar)

Background

Migrant women in the UK experience inequalities in health and wellbeing and in particular, their experiences of pregnancy and childbirth. Roma women from Central and Eastern Europe suffer barriers to healthcare in their original countries and across Europe contributing to a lack of engagement with health services. 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 low uptake of antenatal care. This study aims to address this issue by creating a co-designed accessible antenatal care community 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 an antenatal care information resource.

Objectives

To explore with a group of Roma women, their experiences of healthcare services and cultural beliefs about pregnancy and childbirth

To work with them to assess the accessibility and acceptability of a range of available antenatal information resources selected following a review of resources

To explore and discuss options for forms of antenatal care information for example digital resources catering specifically to their needs

To co-create a low-resolution paper prototype of a community-based antenatal care information resource that meets their needs

Methods

Months 1-2: Scoping review on Roma women's maternity needs, and?review of publicly accessible antenatal information resources to produce a selection for the women to consider

Months 3-5: A series of up to eight 2-hour community participatory workshops using design-based participatory methods with Roma women will discuss engagement with health and social care, home remedies, diet and exercise during pregnancy, the effects of smoking and alcohol, and pregnancy-related health problems, to identify issues and gaps in their knowledge. An account of the evidence pathway is provided through audio and visual data collection methods.

Months 6-8: Qualitative analysis and project report writing, culminating in a stakeholder engagement workshop, to determine scalability with project advisory group, with potential transferable insights to other marginalised newly arrived groups of migrant women.

Outcomes: a) design considerations presented alongside the co-designed prototype for an antenatal care information resource, b) final design to be scaled up, piloted and evaluated with the wider Roma community of women, c) an inclusive and participatory approach for best practice that can be replicated with other marginalised groups of migrant communities, e) improved perinatal and maternal outcomes for Roma women.

Our research employs a person- and community-centred participatory research approach that harnesses the potential of Roma women to develop tailored resources to meet their antenatal care information needs, through two reviews and design-based participatory activities.

Work package 1:

a scoping review of relevant literature referring to Roma women's experience of healthcare in Europe (2010-2022) for background information

a?review of publicly accessible antenatal information, examined and evaluated for the quality of their content and presentation using content analysis.

Work package 2:

Up to eight participatory workshops over five months, with 8-10 Czech-Slovak Roma women purposively sampled (i.e., age, parity), employing design-based methods e.g., mind-mapping and storyboarding, to capture the 'pregnancy stories' of the participants. Women will discuss access and experiences of healthcare, for e.g., cultural beliefs about pregnancy and childbirth, language support, home remedies, diet and exercise, and pregnancy-related health problems. The different information resources selected from the review will then be presented to the women to consider. The last two workshops will aim to co-produce a summary of the findings and a co-created prototype for a subsequent development.

Participant observation will record and produce a descriptive model of the process as part of the evidence pathway. Researchers will agree a coding frame after independently coding samples of recorded data, meeting monthly with the expert advisory panel to reflect on the research process. Data will be analysed thematically with the help of NVIVO software. A stakeholder engagement workshop will present the following results: i) an understanding of Roma women's healthcare experiences and antenatal care information needs, ii) their assessment of publicly available antenatal care information resources and iii) a low-resolution prototype of a resource reflecting women's preferences.