Co-Designing an Engagement Strategy to Include the Voices of a Minority Group in Assessing the Quality of Maternity and Neonatal Care.

INTRODUCTION: This study outlines the co-design approach taken to engagement with women from the Roma community to capture their experience of maternity and neonatal care in Ireland. The findings of this study will be used to assess the relevance and completeness of measures of quality and safety of maternity care in capturing these experiences.

METHODS: An engagement strategy was co-designed with Cairde, a community health development organisation. A series of four workshops were co-designed to facilitate open discussion with women from the Roma community (n = 8) on their experiences and perspectives of maternity and neonatal care in Ireland and to provide information to participants on the progression of pregnancy, preparation for childbirth, their health and healthcare access. The co-design approach aimed to identify and address barriers to effective engagement, including mistrust, experiences of discrimination, accessibility, literacy and language proficiency and to ensure the workshops were delivered in a culturally sensitive manner. A questionnaire to capture details of their experience of accessing and using maternity services was also co-designed with Cairde, whose Roma Programme staff facilitated data collection.

RESULTS: The experience of women from the Roma community using Irish maternity services from pregnancy to childbirth and postnatal care was captured. The involvement of Cairde gained the trust of participants, facilitated open discussion and ensured full engagement throughout. The use of pictures/graphics and verbal communication with non-technical language, with translation and interpretation by Roma Peer Support Workers, ensured the online workshops were accessible. Online delivery was made possible within the existing digital framework of Cairde's Roma Programme.

CONCLUSIONS: Through partnering with Cairde, a community health development organisation with the capacity to participate and strong links to the Roma community, the many barriers to engagement with this marginalised minority community were addressed. This partnership approach afforded the research team privileged access to the Roma community, facilitating the team to engage with this seldom-heard group.

PATIENT OR PUBLIC CONTRIBUTION: This collaboration between academic researchers, staff from the Health Service Executive (HSE), and Cairde, a community health development organisation, aimed to involve all stakeholders, including members of the Roma community, in the co-design of an engagement strategy that allowed the experiences and perspectives of women from the Roma community who have given birth in Ireland to be captured. Staff from Cairde, including members of the Roma Community, co-designed a series of workshops and a questionnaire, and provided support on the set-up and delivery of the workshops and questionnaire. Two of the eight Roma women who participated in the co-design process also participated in the workshops. They provided guidance on communication and cultural considerations. This collaboration enabled the successful delivery of focus groups, informational sessions and a questionnaire, with full participation by the eight participants. Staff from Cairde, including members of the Roma community, also contributed to the interpretation of findings and drafting of the papers. Partnering with Cairde afforded privileged access to the Roma community, allowing the research team to engage with this seldom-heard group. The many barriers to this engagement were addressed through partnering with an organisation with the trust of the Roma community and with the capacity to participate [1].