How we define recurrent miscarriage matters: A qualitative exploration of the views of people with professional or lived experience.

ABSTRACT

BACKGROUND: Recurrent miscarriage (RM) affects 1%-3% of women/couples of reproductive age depending on the definition used, for example, whether 2 or ≥3 miscarriages. Stakeholders' views of how RM is defined have received limited attention to date. A definition reflects the medical evidence and values of a society at the time, and thus warrants ongoing review. AIM: We aimed to explore the views of women and men with lived experience of RM, and those involved in the delivery/management of services and supports, on how RM is and/or should be defined. METHODS: We adopted a qualitative study design, incorporating semi-structured interviews. We used purposive sampling to recruit participants in the Republic of Ireland, ensuring diverse perspectives were included. Women and men with lived experience of ≥2 consecutive first-trimester miscarriages were recruited via health professionals and social media; other participants via the research team's networks. Interviews were audio-recorded, transcribed, pseudo-anonymized and analysed using reflexive thematic analysis. FINDINGS: We conducted interviews with 42 health professionals/service providers and 13 women and 7 men with lived experience of RM (June 2020 to February 2021). We generated three interrelated themes from the data (i) The need for a standardized definition of recurrent miscarriage-Finding a balance between research evidence, individual needs and healthcare resources, (ii) The definition is a route to finding an answer and/or validating women/couples' experience of loss and (iii) Working around the definition-Advocacy and impacts. CONCLUSION: A nuanced approach to defining RM is warranted, one which is evidence-informed recognizes the individual needs of women/couples, and considers healthcare resources. PATIENT OR PUBLIC CONTRIBUTION Members of the multidisciplinary RECURRENT (REcurrent miscarriage evaluating CURRENT services) Project Research Advisory Group (including four parent advocates, two of whom are co-authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes.