Lived experience of hypertensive disorders of pregnancy: a systematic review and meta-synthesis.

BACKGROUND: Hypertensive disorders are major causes of maternal and neonatal morbidity and mortality, affecting ∼10% pregnancies worldwide. OBJECTIVE: Understanding the lived experience of women with hypertensive disorders during pregnancy is important to inform best practice and provide holistic care. STUDY DESIGN: This is a systematic review and meta-synthesis of studies containing qualitative components relating to direct lived experience of hypertensive disorders of pregnancy. Medline via Ovid, Embase via Ovid, CINAHL via Ebsco, PsycINFO via Ebsco, Scopus, Web of Science Core Collection, and ASSIA via ProQuest were searched between database inception and June 2024. Quality assessment was performed using the Critical Appraisal Skills Programme checklist for qualitative research. Themes were labeled and organized into a framework using NVivo software. RESULTS: Eighteen studies were included in the meta-synthesis. Anxiety, stress, fear and panic emerged as the most common emotional experiences during hypertensive disorders of pregnancy. Loss of control was also mentioned frequently and consistently across studies (frequency effect size 38.9% and intensity effect size 15.3%). Emotional responses to physical symptoms or lack thereof, and feelings about the impact of the complicated pregnancy on family and community also emerged as central themes associated with hypertensive disorders of pregnancy. CONCLUSION: A range of emotional experiences was captured across the studies included in our meta-synthesis, some of which were observed across global settings whereas others were context-dependent. Interventions and care pathways for pregnancies affected by hypertensive disorders should aim to support women through complex emotional experiences as well as reducing morbidity and mortality.

Successful integration of newborn genetic testing into UK routine screening using prospective consent to determine eligibility for clinical trials.

OBJECTIVE: INGR1D (INvestigating Genetic Risk for type 1 Diabetes) was a type 1 diabetes (T1D) genetic screening study established to identify participants for a primary prevention trial (POInT, Primary Oral Insulin Trial). METHODS: The majority of participants were recruited by research midwives in antenatal clinics from 18 weeks' gestation. Using the NHS Newborn Bloodspot Screening Programme (NBSP) infrastructure, participants enrolled in INGR1D had an extra sample taken from their day 5 bloodspot card sent for T1D genetic screening. Those at an increased risk of T1D were informed of the result, given education about T1D and the opportunity to take part in POInT. RESULTS: Between April 2018 and November 2020, 66% of women approached about INGR1D chose to participate. 15 660 babies were enrolled into INGR1D and 14 731 blood samples were processed. Of the processed samples, 157 (1%) had confirmed positive results, indicating an increased risk of T1D, of whom a third (n=49) enrolled into POInT (20 families were unable to participate in POInT due to COVID-19 lockdown restrictions). CONCLUSION: The use of prospective consent to perform personalised genetic testing on samples obtained through the routine NBSP represents a novel mechanism for clinical genetic research in the UK and provides a model for further population-based genetic studies in the newborn.