Abstract

Abstract Study question How do women with recurrent miscarriage (RM) and infertility and healthcare professionals view and experience services and supports? Summary answer RM and infertility is a complex experience, intensified by divisions within the Irish healthcare system and a lack of knowledge and awareness around reproductive health What is known already While services for recurrent miscarriage (RM) are gradually improving with increasing awareness, women with RM and infertility have received limited attention in research and clinical guidance internationally. RM and infertility are separately associated with psychological distress and adverse pregnancy outcomes. Moreover, the dual experience is devastating for women and couples, and the optimal supports remain unidentified. Identifying the needs of this cohort is especially pertinent in the Republic of Ireland as public fertility care expands to include assisted reproductive technologies, previously only available through private or not-for-profit fertility clinics. Study design, size, duration We undertook a qualitative semi-structured interview study using a Reflexive Thematic Analysis approach. Thirty-three interviews were conducted, virtually on MIcrosoft Teams and in-person, between Dec 2022 and May 2023. These were audio-recorded, and data transcribed to NVivo12 for subsequent analysis. Participants/materials, setting, methods We recruited healthcare professionals delivering RM and/or fertility services, and women who experienced two or more consecutive miscarriages in the last four years and had undergone fertility care, through our professional networks and social media. Purposive sampling was used to include diverse perspectives across disciplines, public and private sectors, lived experiences and geographical locations. Interviews were audio-recorded, and data transcribed for subsequent reflexive thematic analysis. Main results and the role of chance We interviewed 16 healthcare professionals and 17 women with lived experience. Women were aged 35-47 and had experienced two to nine miscarriages. All received fertility care in ROI, with some additional care abroad. Healthcare professionals included four Clinical Midwifery Specialists in Bereavement eight Consultants and four Clinical Nurse Specialists in Fertility. We actively generated four themes during data analysis. (1) “Exploring all avenues”- women sought the best care and information, but their search was hindered by stigmatisation, definitions of RM and misinformation. (2) “Exhausting all resources” - women wanted to ensure they had tried everything to have a baby, investing all physical, emotional and financial reserves (3) “Separateness” - women feel remote from others who have not experienced RM or infertility and removed from both maternity and fertility services, as well as caught between public and private systems. (4) “No woman is an island” - supports come from multiple sources in their lives and in various guises but are limited, especially psychological supports. Limitations, reasons for caution This was a sample of white, educated, professional women with access to private fertility services. While a diverse group of HCPs were interviewed with current and past clinical experiences of private fertility services, there was limited engagement from fertility care providers. Wider implications of the findings This study identifies areas for improvement, such as access to investigations and supports, as well as the experiences and specific care and support needs of women/couples experiencing RM and infertility. Issues such as women’s awareness of their reproductive health, and equity in services, are applicable to all maternity service users. Trial registration number N/A

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