'An extra level of kind of torment': Views and experiences of recurrent miscarriage care during the initial phases of COVID-19 in Ireland-A qualitative interview study.

INTRODUCTION: Maternity services underwent much change during the COVID-19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID-19 pandemic on those experiences and perceptions of care. METHODS: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first-trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi-structured interviews, virtually all due to COVID-19 restrictions, between June 2020 and February 2021. These were audio-recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. RESULTS: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first-'Disconnected'-describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in-person care was highlighted. CONCLUSION: Our analysis provides rich insights into the significant impacts that the COVID-19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. PATIENT OR PUBLIC CONTRIBUTION: Members of the multidisciplinary RE:CURRENT 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.

Factors that shape recurrent miscarriage care experiences: findings from a national survey.

BACKGROUND: Learning what matters to women/couples with recurrent miscarriage (RM) is essential to inform service improvement efforts and future RM care practices. Previous national and international surveys have examined inpatient stays, maternity care, and care experiences around pregnancy loss, but there is little focus on RM care. We aimed to explore the experiences of women and men who have received RM care and identify patient-centred care items linked to overall RM care experience. METHODS: Between September and November 2021, we invited people who had experienced two or more consecutive first trimester miscarriages and received care for RM in Ireland in the ten-year period prior to participate in a cross-sectional web-based national survey. The survey was purposefully designed and administered via Qualtrics. It included questions on sociodemographics, pregnancy and pregnancy loss history, investigation and treatment for RM, overall RM care experience, and patient-centred care items at various stages of the RM care pathway such as respect for patients' preferences, information and support, the environment, and involvement of partners/family. We analysed data using Stata. RESULTS: We included 139 participants (97% women, n = 135) in our analysis. Of the 135 women, 79% were aged 35-44 years (n = 106), 24% rated their overall RM care experience as poor (n = 32), 36% said the care they received was much worse than expected (n = 48), and 60% stated health care professionals in different places did not work well together (n = 81). Women were more likely to rate a good care experience if they had a healthcare professional to talk to about their worries/fears for RM investigations (RRR 6.11 [95% CI: 1.41-26.41]), received a treatment plan (n = 70) (RRR 3.71 [95% CI: 1.28-10.71]), and received answers they could understand in a subsequent pregnancy (n = 97) (RRR 8 [95% CI: 0.95-67.13]). CONCLUSIONS: While overall experience of RM care was poor, we identified areas that could potentially improve people's RM care experiences - which have international relevance - such as information provision, supportive care, communication between healthcare professionals and people with RM, and care coordination between healthcare professionals across care settings.

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

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 RE:CURRENT (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.