Jane Sandall

Background: In the UK, newborn babies are a growing group of children entering the care system due to safeguarding concerns. Their mothers often experienced a life course of adversity and trauma, resulting in fractured trust in public services and health and social care professionals. Moreover, pregnant and postnatal women with involvement from child protection agencies are known to have increased risk of perinatal morbidity and mortality. To address the existing evidence gaps around perinatal healthcare and outcomes for this group of women, the MUMS@RISC study was designed, with cyclical involvement of an advisory group with women with lived experience. Methods: We adopted a trauma-informed approach to public and patient involvement and engagement, which was reflected in our study values, the study design, as well as in our dissemination strategy. Results: As part of the dissemination, a summary report with key research findings was co-produced, accompanied by artwork that was co-created by the advisory panel, the lead researcher and an artist. The step-by-step process of co-creation of the MUMS@RISC artwork allowed for gradual incorporation of feedback of the advisory panel, resulting in intricate layers of details and meaning in each of the illustrations. Conclusions: Our approach to trauma-informed research collaboration and participation demonstrates that involving people with traumatic lived experience in a robust, sensitive way can be done and strengthens the credibility, contextual accuracy and interpretative validity of research findings. Our evaluation of co-producing artwork as part of our dissemination strategy highlights the potentially healing and empowering nature of genuine and sensitive co-production, providing a rare opportunity to centre the voices of a marginalised group of mothers and reflect their stories within the wider research findings through art.

Background: In the UK, numbers of newborn babies entering state care through child protection processes have significantly increased in the last decade. Their mothers often have experienced cumulative and intersecting disadvantages, including childhood abuse and domestic abuse (DA). DA will often be a key factor in child protection decision-making, with a persistent narrative of mothers ‘failing to protect’ their children. Given the profound consequences of DA disclosures and the failure-to-protect discourse that might impact care proceeding outcomes for these mothers, it is important to explore the factors influencing DA disclosure and the complexities that this population faces. Objectives: To explore the experiences of DA disclosure in perinatal healthcare settings among mothers who had a baby removed at birth; To understand barriers and facilitators that impact DA disclosure in this context. Design: The MUMS@RISC study was a mixed-methods doctoral research study. This manuscript focuses on the qualitative part of the study, with women who had a baby removed at birth due child protection processes. Methods: A secondary analysis of narrative interview data from the MUMS@RISC study, using Braun and Clarke’s Reflexive Thematic Analysis. Robust lived experience involvement and trauma-informed approaches were adopted throughout the entire study design. Results: Interview data from 7 women were included. Three themes were generated, each with sub-themes: 1) Previous adversity leading to current vulnerability; 2) ‘”It’s not that easy” – Navigating, disclosing and leaving an abusive relationship’; and 3) Finding a way out. Conclusion: Lifelong adversity leading to vulnerability and fear, coupled with system-level barriers, each led to inadequate support and care, impacting DA disclosure among women who have their baby removed at birth and appropriate professional response. Professional understanding about these interconnecting levels of barriers to DA disclosure and the role of coercive control in DA and sensitive routine enquiry about DA is crucial to facilitate opportunities for disclosure.

The latest Lancet series on optimising child and adolescent health and development highlights the need to support a holistic agenda to improve the integration and implementation of evidence-based interventions across health, education, and social systems to protect, nurture, and support the health and developmental potential of every child and adolescent [1]. In addition to health […]

Introduction: In the last decade, UK maternal death surveillance data have shown that among the women who died during pregnancy and the year after birth (the perinatal period), the proportion of women with Children’s Social Care (CSC) involvement nearly doubled. Parental non-engagement in the context of CSC involvement has been described as a particular professional concern. Objective: To explore organisational and system barriers when accessing and engaging with healthcare services experienced by women with CSC involvement who subsequently died during the perinatal period. Methods: MBRRACE-UK national surveillance data were used to identify women who died during or in the year after pregnancy in the UK between 2014 and 2021 and who had CSC involvement. A confidential enquiry of healthcare records of a random sample of women with CSC involvement during pregnancy or in the year after the end of pregnancy and who subsequently died (n=47) was undertaken to explore barriers to care. Results: We identified four themes to describe the barriers faced by women with CSC involvement when accessing and engaging with healthcare services in the perinatal period: (1) burden of care, (2) disruption of care, (3) follow-up of non-attendance and (4) bias in care. Our findings highlighted the additional challenges that women had to contend with, while already facing multiple adversities in their daily lives. Conclusion: Our confidential enquiry found that the existing narrative of non-engagement among women with CSC involvement is unfounded for most women. Care for women with CSC involvement needs to be made trauma-informed, accessible and minimally disruptive.

Background: Evidence on how poverty and social determinants influence adverse maternal and perinatal outcomes in the UK is limited. While ethnicity and area-level deprivation are well described, fewer studies examine the cumulative impact of poverty-related factors such as low income, employment insecurity, housing, and access to social support. Methods: We analysed 67,308 pregnancies from the eLIXIR cohort using linked NHS records. Social determinants were defined using the WHO framework as structural (ethnicity, migration status, area deprivation) and intermediary (housing, employment, financial hardship, social support, barriers to care). The primary outcome was a composite adverse perinatal outcome. Binary logistic regression models with random intercepts accounted for repeated pregnancies, and adjusted risk ratios (aRRs) were estimated controlling for key sociodemographic and clinical factors. Results: Structural poverty-related social determinants of health were associated with increased risk of adverse perinatal outcomes, including Black (aRR 1.50, 95% CI 1.42–1.59), Asian (aRR 1.49, 95% CI 1.39–1.59), and other minoritised ethnic backgrounds (aRR 1.50, 95% CI 1.42–1.59), residence in the most deprived areas (aRR 1.10, 95% CI 1.01–1.20), non-UK birth (aRR 1.20, 95% CI 1.15–1.25), and recent migration (aRR 1.32, 95% CI 1.14–1.53). Intermediary poverty-related social determinants of health were independently associated with increased risk beyond ethnicity and deprivation, including lack of social support (aRR 1.21, 95% CI 1.02–1.42), unemployment (aRR 1.16, 95% CI 1.10–1.23), financial hardship (aRR 1.17, 95% CI 1.01–1.35), living in social housing (aRR 1.16, 95% CI 1.09–1.24), transfer of care between hospitals (aRR 1.27, 95% CI 1.18–1.37), missed appointments (aRR 1.19, 95% CI 1.04–1.37), and unscheduled maternity care use (aRR 1.21, 95% CI 1.14–1.29). Women exposed to multiple overlapping poverty-related social determinants of health had a substantially higher likelihood of adverse perinatal outcomes (aRR 1.23, 95% CI 1.12–1.35). Conclusions: Structural and intermediary social determinants related to poverty have a substantial and cumulative impact on maternal and perinatal outcomes, independent of individual clinical risk. Addressing these inequities requires integrated, cross-sector strategies that extend beyond healthcare to the wider social conditions influencing maternal and child health. Clinical trial number: Not applicable.

Background: Raised blood pressure affects 10% of pregnancies worldwide, of which around half develop pre-eclampsia including proteinuria, causing maternal and perinatal morbidity and mortality. Objectives: To develop and test interventions for self-monitoring of blood pressure designed to improve the detection and management of hypertension in pregnancy. Additionally, to test the accuracy of self-testing of urine for protein, a key marker of pre-eclampsia. Design and methods: Development phase, a pilot trial, two large randomised controlled trials of self-monitoring of blood pressure interventions with integrated economic evaluations, linked qualitative work, a large survey and a diagnostic accuracy study of self-testing for proteinuria, and finally economic modelling. Setting and participants: Antenatal clinics in 16 English hospitals. Participants were pregnant women and antenatal healthcare professionals. Patient and public involvement: Comprehensive involvement from initial development through to dissemination, with collaboration from both individuals and relevant charities and organisations. Interventions: Self-monitoring of blood pressure supported by app to improve the detection (BUMP1) and management (BUMP2) of raised blood pressure in pregnancy (WS3.2.1 and 2). Proteinuria self-testing by pregnant hypertensive women (UDIP, WS4). Main outcome measures: Qualitative data informed the development of the BUMP App and trial (WS1). Feasibility of self-monitoring of blood pressure in hypertensive pregnancy (recruitment, retention, adherence and intervention persistence) (WS2). Prevalence of self-monitoring of blood pressure during pregnancy (WS3.1). Time to diagnosis of hypertension defined in routinely recorded clinical data (BUMP1, WS3.2.1) and difference in mean systolic blood pressure recorded by healthcare professionals between randomisation and birth (BUMP2, WS3.2.2). WS3.3 and 4.2 evaluated experiences with the trial and UDIP respectively using inductive and deductive thematic analysis. Within-trial cost–consequence analysis and long-term cost-effectiveness modelling (WS3.4 and WS5). Proteinuria testing accuracy (WS4.1). Results: WS1 : Areas important to staff included providing clear patient information and supporting them in decision-making in the context of discrepant readings. The intervention was optimised iteratively with pregnant women. WS2 : A feasibility trial showed that the self-monitoring of blood pressure intervention was feasible and acceptable. WS3.1 : Data from a survey of 5181 women showed that 19% of pregnant women were currently self-monitoring blood pressure but only 482/983 (49%) shared this information with healthcare professionals. WS3.2.1 : Self-monitoring of blood pressure in addition to usual care did not lead to an earlier diagnosis of clinic hypertension in routinely recorded clinical data with no evidence of differences in maternal or perinatal outcomes or serious adverse events (BUMP1). WS3.2.2: Self-monitoring of blood pressure in pregnancy hypertension did not improve clinic blood pressure control, with no difference in maternal or perinatal outcomes or serious adverse events (BUMP2). WS3.3: Self-monitoring was generally accepted by women and professionals with differences in views of which blood pressure data to give precedence. Women found self-monitoring empowering, provided health professionals considered home readings in their management. On occasion self-monitoring proved unsettling due to uncertainty. WS3.4: Within trial economic analyses revealed no significant difference in overall total costs between trial arms in either BUMP1 or BUMP2. Women’s health-related quality of life (EQ-5D-5L) was similar between groups in both trials. WS4 : Self-testing for proteinuria had a sensitivity of 0.71 (95% confidence interval 0.62 to 0.79) and a specificity of 0.89 (95% confidence interval 0.84 to 0.92) compared to laboratory protein–creatinine ratio testing and this was not clinically or statistically different when compared to healthcare professionals or a colorimetric monitor (UDIP, WS4.1). Self-testing was generally acceptable (WS4.2). WS5 : Model frameworks capable of facilitating exploration of the long-term cost-effectiveness of combining self-monitoring of blood pressure with blood pressure treatment and management policies were developed for use in future research projects in the area. Implementation : Self-monitoring was rapidly and widely implemented during the pandemic but has yet to become fully embedded in clinical pathways. Limitations: Self-monitoring of blood pressure by women in the control groups; difficulties in testing self-monitoring of blood pressure in clinical pathways in the absence of evidence or accepted treatment thresholds; process evaluation suggested women and professionals privileged different information. Conclusions: Self-monitoring of blood pressure during higher risk or hypertensive pregnancy was feasible, acceptable, safe, and no more expensive, but did not improve the detection of hypertension or blood pressure control in those with hypertension when used alongside usual care. During the programme, self-monitoring of blood pressure entered common practice in pregnancy, a process accelerated by the pandemic. Pregnant women can read a dipstick for urinary protein with similar accuracy to healthcare professionals or colorimetric testing, and find this acceptable, suggesting that self-testing could be included in clinical pathways. Future work: Future trials of interventions including self-monitoring of blood pressure should test strategies in the context of novel clinical pathways. Study registration: This study is registered as Current Controlled Trials ISRCTN16018898. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref.: RP-PG-0614-20005) and is published in full in Programme Grants for Applied Research ; Vol. 14, No. 3. See the NIHR Funding and Awards website for further award information.