Evidence confirms that provision of end-of-life care for infants, children and young people varies across the United Kingdom, however it is not clear how this variation impacts children and their families. This study aimed to assess parental outcomes and experiences of their infant, child or young person receiving end-of-life care in the United Kingdom through a cross-sectional mixed-methods survey. Bereaved parents were sent a survey, after their infant or child had died and had received end-of-life care in a neonatal or paediatric intensive care unit. The survey yielded qualitative and quantitative data, which were analysed using qualitative content analysis and graphical summaries of quantitative results. Data were integrated using joint display matrices. One hundred sixty nine bereaved parents completed the survey, of which 60

The prevalence of childhood obesity has quadrupled globally over the last 30 years highlighting the urgency for robust research on modifiable risk factors. This study investigates the association between prenatal and early-life (0–24 months) antibiotic use and obesity at 4–5 years within the Born in Bradford (BiB) cohort, and whether this differs by ethnicity or by sex. BiB is a large, multi-ethnic birth cohort of 13 858 children in Bradford, UK. Data for children and their mothers were obtained from a baseline questionnaire, linked electronic health records (including maternity records and general practitioner prescriptions), and anthropometric measurements at school. Logistic regression models were employed to estimate the associations between antibiotic exposure in pregnancy and early-life and the outcome, having obesity at age 4–5 years, adjusting for several confounders. In this population, nearly a tenth of children had obesity, just over a third were exposed to antibiotics in pregnancy, and nearly three quarters were exposed in the first two years of life. The adjusted analysis revealed no clear evidence of an association between prenatal antibiotic use and having obesity at 4–5 years (aOR 1.09; 95

BACKGROUND:Clinical guidelines now recommend administering intrapartum antibiotic prophylaxis (IAP) before skin incision at caesarean section to prevent maternal infection. However, this practice exposes the fetus to antibiotics, raising concerns about potential long-term effects on the infant microbiome and the risk of childhood obesity. OBJECTIVES:To assess whether the timing of IAP at caesarean section-before skin incision versus after umbilical cord clamping-is associated with childhood obesity at age 4-5 years. METHODS:We conducted a quasi-experimental study of a hospital-wide policy change in clinical practice using data from two birth cohorts (Born in Bradford [BiB] and Born in Bradford's Better Start [BiBBS]). The study included 1985 children of White British or Pakistani heritage born by caesarean section between 2007 and 2019. Children exposed to pre-incision IAP (n = 324) were compared with those unexposed (post-cord clamping IAP; n = 1661). The primary outcome was obesity (BMI z-score > 95th percentile) at age 4-5 years. Adjusted Risk Ratios (aRR) were estimated using multivariable Poisson regression stratified by ethnicity. RESULTS:The prevalence of obesity was 11.9%. Adjusted risk ratios for obesity were 1.25 (95% CI 0.53 to 2.98) for White British children and 1.25 (95% CI 0.64 to 2.43) for Pakistani children. Similarly, estimates for BMI z-score had wide confidence intervals indicating, limited precision. CONCLUSIONS:We did not observe a clear difference in childhood obesity at 4-5 years between pre-incision and post-cord clamping prophylactic antibiotics at caesarean section. Confidence intervals were wide, and modest clinically relevant effects cannot be excluded. Findings are compatible with no large adverse effect and may provide reassurance regarding the metabolic safety of current clinical practice.

OBJECTIVE:To investigate whether the risk of asthma, eczema and allergic rhinitis at 5 years in children born by caesarean section (CS) differs by the timing of antibiotic administration to the mother (pre-incision vs. post-cord clamping). DESIGN:Natural experiment using birth cohort data. SETTING:UK single centre population-based birth cohort. PARTICIPANTS:3013 liveborn children delivered by CS, from the Born in Bradford (BiB) cohort born 2007-2011 and BiB's Better Start (BiBBS) cohort born 2016-2019. Only the first-born of multiple births was included. MAIN OUTCOME MEASURES:Risk of asthma, atopic eczema and allergic rhinitis at age 5 years. RESULTS:Among 3013 children, 579 (19.2%) were exposed to pre-incision antibiotics. At 5 years, 272 (9.0%) children had asthma, 672 (22.3%) had eczema and 180 (6.0%) had allergic rhinitis. There was no evidence of an increased risk of asthma (adjusted risk ratio [aRR] 1.01, 95% CI 0.56, 1.83; adjusted risk difference [aRD] 0.08 per 100, 95% CI -5.28, 5.44), eczema (aRR 0.96, 95% CI 0.68, 1.35; aRD -1.01 per 100, 95% CI -8.65, 6.63) or allergic rhinitis (aRR 1.16, 95% CI 0.59, 2.28; aRD 0.88 per 100, 95% CI -3.17, 4.92) at 5 years in children exposed to pre-incision antibiotics versus post-cord clamping. CONCLUSIONS:This study found no evidence of an association between pre-incision antibiotics for CS and increased risk of asthma, eczema or allergic rhinitis by age 5. These findings contribute to the evidence base informing the optimum timing of maternal antibiotic prophylaxis for CS, balancing risks and benefits to the mother and her child.

OBJECTIVES:Despite the marked improvement in child mortality over the last two decades, more than 7 million infants, children and young people still die worldwide every year. In the UK, four National Health Service settings care for more than 60% of the children who die each year: neonatal and paediatric intensive care units and children and teenager cancer principal treatment centres. There is limited evidence on how end-of-life care is experienced by parents and how this differs across settings. We aimed to explore parents' experiences of receiving end-of-life care for their child in these settings. METHODS:A multisite qualitative study involving in-depth interviews with bereaved parents, analysed using reflexive thematic analysis. Recruitment via 14 National Health Service sites, three children's hospices and two third sector organisations across the UK. RESULTS:55 parents participated (37 mothers, 18 fathers), representing 44 children and young people (median age 7 years, range 0-23 years). 42 interviews were conducted. Experiences of care were highly variable. Parents' perceptions of high quality end-of-life care were highlighted within three themes: (1) building the foundations for high quality end-of-life care; (2) working together towards best decisions and care and (3) continuing care after death and into bereavement. CONCLUSIONS:Bereaved parents' experiences of care at the end of life are too inconsistent. Feeling heard is crucial; without it, there is no foundation on which adequate end-of-life care can be built. Care must be tailored to the circumstances of each family and should continue after a child's death and into bereavement.

BACKGROUND:Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite differences in delivery models across countries and cultures, healthcare professionals need to be able to support families through this difficult time. However, there is limited evidence to base high quality end-of-life care. AIM:To explore healthcare professionals' experiences of delivering end-of-life care to infants, children and young people, their needs and the factors affecting access and implementation. DESIGN:Qualitative study employing online focus groups, analysed using framework analysis. SETTING/PARTICIPANTS:Healthcare professionals who provided end-of-life care to infants, children and young people, across cancer centres and neonatal and paediatric intensive care units. RESULTS:A total of 168 professionals from 13 tertiary hospitals participated in 23 focus groups. Three themes highlighted many barriers to delivering optimal care: (1) Professional perceptions of end-of-life care; (2) What we want to provide versus what we can and (3) Workforce and sustainability: Healthcare professional support. These illustrate professionals' awareness and desire to deliver high-quality care, yet are constrained by a number of factors, suggesting the current system is not suitable. CONCLUSIONS:This study provides an in-depth exploration of paediatric end-of-life care, from those professionals working across the settings accounting for the majority of end-of-life care delivery. Many of these issues could be resolved by investment in: funding, time, education and support to enable delivery of increasingly complex end-of-life care.

OBJECTIVE:To compare inspection-informed ratings of individual maternity units published by the Care Quality Commission (CQC) with clinical outcomes and practice measures. DESIGN:Observational study using linked national maternity and administrative hospital data. SETTING:The English NHS. POPULATION:Women with singleton pregnancies who gave birth at term, April 2018-March 2019. METHODS:Outcomes and practice measures were compared with ratings using hierarchical models and empirical Bayes estimates adjusted for case-mix and unit characteristics. MAIN OUTCOME MEASURES:Severe maternal and severe neonatal morbidity. Practice measures included non-spontaneous birth (either caesarean birth before labour or the induction of labour) and intrapartum caesarean birth. RESULTS:Of 501 719 included women, 39 930 (8.0%) gave birth in 11 units rated 'outstanding', 357 114 (71.2%) in 110 units rated 'good', and 104 675 (20.9%) in 35 units rated 'requires improvement/inadequate'. Severe maternal morbidity did not vary by rating: 1.2% [95% confidence interval 0.87-1.5], 1.3% [1.1-1.4], and 1.0% [0.87-1.1], respectively (p = 0.59), nor did the risk of severe neonatal morbidity: 4.3% [3.3-5.6], 4.0% [3.6-4.5], and 3.4% [2.9-3.9], respectively (p = 0.48). There was no variation across the ratings in the rate of non-spontaneous birth (48.1% [42.2-53.9], 47.9% [46.4-49.4], and 47.9% [45.1-50.8], respectively; p = 0.87) nor intrapartum caesarean (16.8% [14.6-19.3], 16.6% [15.8-17.3], and 15.8% [14.9-16.7], respectively; p = 0.87). CONCLUSIONS:There was no association between ratings of maternity units published by the national healthcare regulator and clinical outcomes and practice measures derived from routinely collected data. Concerted action is urgently needed to improve the inspection-informed ratings of maternity services.

BACKGROUND:Preterm infants typically receive intravenous fluids or parenteral nutrition while milk feeds are gradually increased. Feeding with milk sooner could reduce length of hospital stay and risk of invasive infections but might increase the risk of necrotising enterocolitis. We aimed to investigate if exclusively enteral fluids (ie, full milk feeds) from day 1 compared with gradual feeding supplemented with intravenous fluids or parenteral nutrition reduces the length of hospital stay in infants born at 30 weeks and 0 days (30+0weeks) to 32+6 weeks of gestation. METHODS:This open-label, parallel-group, multicentre, randomised, superiority trial recruited mothers of infants born at 30+0 weeks to 32+6 weeks of gestation, in 46 neonatal units in UK hospitals. Infants younger than 3 h were included if they were clinically stable; those with congenital anomalies that make enteral feeding unsafe and who were small for gestational age with reversed end-diastolic flow on umbilical doppler were excluded. Parents and the clinical team could not be masked, but investigators and data analysts were masked until after database lock. The mother was randomly assigned to either full milk feeds (60-80 mL/kg per day) or gradual milk feeding (maximum of 30 mL/kg per day on day 1) with intravenous fluids or parenteral nutrition for their infant within 3 h of birth using a web-based minimisation algorithm with a random element to ensure balance on important prognostic factors. The primary outcome was length of hospital stay; events of hypoglycaemia and necrotising enterocolitis were safety outcomes and analysis was performed by intention-to-treat. This trial was prospectively registered (ISRCTN89654042) and follow-up to 24 months is ongoing. FINDINGS:Between Oct 15, 2019, and July 14, 2024, we recruited and randomly assigned 1761 mothers, enrolling 2088 infants (1047 full milk feeds, 1041 gradual feeding). Mean gestational age was 31·7 weeks (SD 0·8), which was the same in both groups, and mean birthweight was 1626·0 g (301·8) in the full milk feeds group and 1617·1 (295·2) in the gradual feeding group. Of 1047 infants in the full milk group, 494 (47·2%) were female and 552 (52·7%) were male and in 1041 infants in the gradual feeding group, 500 (48·0%) were female and 540 (51·9%) were male. Primary outcome data were missing for 18 infants in each group. We found no difference in the length of hospital stay (32·4 days [SD 13·3] in the full milk group vs 32·1 days [13·5] in the gradual feeding group; adjusted difference between means -0·02 days [95% CI -1·07 to 1·03]; p=0·97). Survival to discharge (1030 [99·6%] of 1034 vs 1027 [99·6%] of 1031; -0·004 [95% CI -0·54 to 0·53]), presence of necrotising enterocolitis (4 [0·4%] of 1030 vs 6 [0·6%] of 1027; -0·19 [-0·80 to 0·41]), and mean number of blood glucose tests <2·2 mmol/L (0·6 [SD 1·0] vs 0·5 [0·7]) were similar. Serious adverse events were similar in both groups (eight [0·8%] of 1047 infants in the full milk group vs ten [1·0%] of 1041 infants in the gradual feeding group), all were unrelated to trial intervention. INTERPRETATION:In infants born at 30+0 weeks to 32+6 weeks of gestation, full milk feeds from day 1 does not alter length of hospital stay. It does not increase the risk of necrotising enterocolitis or hypoglycaemia. FUNDING:UK National Institute of Health and Care Research.

Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. These challenges are exacerbated by the continued effects on parents’ working lives and the financial strain of a child receiving end-of-life care. There has been very little recent research of parents’ experiences of these impacts. Analysis of data from the second workstream of a national research programme on end-of-life care for infants, children and young people (ENHANCE) aimed to understand parents’ experiences of the impact on their finances and working lives while their child received end-of-life care. A multi-site qualitative study using in-depth interviews with bereaved parents, analysed using thematic analysis. Recruited through NHS sites, children’s hospices and via the social media of third sector organisations. Forty-two interviews with 55 parents were conducted (Fathers = 16, Mothers = 39), representing 44 children. Four themes were developed: (1) The added cost burden; (2) Pressures of juggling work; (3) Accessing support; and (4) Financial impacts continue after a child dies. Financial hardship is a known consequence of having a child with a life-limiting condition, especially at the end of life, and adds considerable stress to an already painful situation, with the aftermaths continuing into bereavement. The impact is exacerbated by parents’ need to reduce work so they can spend time caring for their dying child, leaving families in a financially and emotionally vulnerable position. There needs to be a consistent approach to immediate practical support from healthcare providers; a review of benefit system delays and the abrupt stopping of Disability Living Allowance; and the development of tailored employment support for parents to remain in or rejoin the workforce. • Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. • There has been little recent research on the impacts on a family’s employment or the financial costs of caring for a child at the end of life. • The direct financial costs to a family of a child receiving end-of-life care are significant and add considerable stress to an already painful situation. • The impacts of additional costs are compounded by parents needing to balance time working with caring for their dying child, and this leaves families in a financially and emotionally vulnerable position. • Parents lack guidance and support to navigate government financial support and charity funded support for which they may eligible. • A proactive policy that is consistently applied is required from healthcare providers, to ensure all families with a child receiving end-of-life care are immediately supported practically and financially. • The Government should review delays in processing of benefit applications, the immediate stopping of Disability Living Allowance when a child dies, and consider a transition to bereavement support payments. • There is a need for improved guidance for employers to provide support which is tailored to the specific needs of those parents caring for a dying child and bereaved parents.

OBJECTIVE:To investigate whether perinatal care delivery in England and Wales varies by ethnicity and socio-economic deprivation, using National Neonatal Audit Programme (NNAP) measures. DESIGN:Retrospective observational study using NNAP (2017-2023) data. SETTING:Neonatal units in England and Wales participating in the NNAP. PARTICIPANTS:Admitted infants born at ≥22 weeks with recorded data on ethnicity, deprivation and relevant NNAP measures. OUTCOME MEASURES:Fourteen NNAP measures covering perinatal optimisation, neonatal care, breastfeeding and parental partnership were explored by ethnicity (White, Black, Asian, Mixed and Other) and deprivation. RESULTS:Ethnicity and deprivation were associated with several measures of care. Compared with White infants, Black, Asian, Mixed and 'Other' ethnicity babies had lower odds of receiving deferred cord clamping (adjusted ORs (aOR) 0.76 (95% CI 0.70 to 0.84), 0.88 (95% CI 0.82 to 0.95), 0.79 (0.68 to 0.92) and 0.75 (0.64 to 0.88), respectively) and had higher odds of abnormal admission temperature. White infants had higher odds of receiving early breastmilk compared with infants from minority ethnic groups, but had lower odds of receiving it at 14 days or at discharge. Compared with the least deprived, the most deprived infants had lower odds of receiving breastmilk, within 48 hours (aOR: 0.58 (95% CI 0.54 to 0.63)) and at discharge (aOR: 0.39 (95% CI 0.36 to 0.43)). There were lower odds of early parental updates and involvement in ward rounds for minoritised ethnic groups (compared with White families) and most deprived (compared with least deprived) families. CONCLUSIONS:Disparities exist in the delivery of perinatal care by ethnicity and deprivation. There are opportunities to improve equity, particularly around deferred cord clamping, breastfeeding support and parental partnership.

OBJECTIVES:This study aimed to explore the perceived impact of ethnicity and race on perinatal care among parents from diverse ethnic minority backgrounds or who had a Black, Asian, or ethnic minority child born in the UK within the last five years to better understand areas of ethnic inequality within perinatal care. DESIGN:This study employed a focused ethnography, recruiting a purposive sample through posters, professional organisations, and social media platforms. Efforts to ensure maximum phenomenon variation included diverse ethnic and geographical representation. Semi-structured interviews using the digital platform, Zoom, explored experiences of accessing and receiving care, with a focus on challenges and perceptions related to ethnicity, race or skin pigmentation. Interview schedules underwent stakeholder validation and pilot testing. NVivo software facilitated qualitative analysis, employing an inductive approach with rigorous coding and thematic analysis. RESULTS:Ethnic minority parental experiences (n = 24) revealed significant systemic challenges within the healthcare system. Three major themes were observed: Parent's voices not being heard, Systemic factors and Discrimination. Participants expressed feelings of marginalisation and inadequate communication with healthcare providers. Instances where concerns were dismissed or belittled, coupled with issues related to consent, highlighted pervasive systemic shortcomings. Structural barriers such as difficulties in scheduling appointments and perceived organisational neglect further compounded these challenges. Discriminatory attitudes and racial stereotypes also influenced the quality of care received, contributing to disparities in health outcomes and maternal wellbeing. Participants noted feelings of social isolation, exacerbated by pandemic-related restrictions and a lack of tailored support networks. CONCLUSION:These findings underscore the urgent need for systemic reforms aimed at ensuring culturally safe and anti-racist practice, addressing communication barriers, and reducing discriminatory practices to enhance healthcare experiences and outcomes for ethnic minority parents. This includes training all healthcare staff around cultural safety.

Objective: To describe current variations in antenatal steroid (AS) course durations in England, Wales, and Scotland according to gestational age, region, and drug. A secondary objective was to assess the availability of AS course duration data over time and by region. Design: Population based observational study. Setting: UK perinatal practice. Sample: Routinely collected data from the National Neonatal Audit Programme (NNAP) relating to preterm infants (< 34 weeks) born between January 2024 and February 2025. Methods: The numbers and proportions were calculated of: 1. women receiving a complete course of AS, 2. AS course duration availability, 3. length of AS course categorised as short (< 18 h), standard (18-36 h), or long (> 36 h). Descriptive statistics and Chi-squared tests assessed variation by region, drug, gestational age, and month for course duration, and by region and month for data availability. Outcome Measures: Primary: proportion of complete AS courses classified as short. Secondary: proportion of complete AS courses with course duration data available. Results: Among 13 489 preterm births (< 34 weeks), 8640 were exposed to a complete antenatal steroid (AS) course; course duration data was available for 4428 (51.3%). Among these, 2069 (46.7%) were short, 2202 (49.7%) standard, and 157 (3.5%) long. The proportion of mothers receiving short AS courses were consistent over time but varied widely by region (Northern 17/223: 7.62%, North-West 359/588 61.05% p < 0.001). Short courses were more commonly used with dexamethasone (1047/1928: 54.30%) than betamethasone (847/2081: 40.75%) (p < 0.001). The proportion of full courses with documented course duration data improved from 35.3% (223/631) in March 2024 to 61.5% (339/551) by February 2025 (p < 0.001), ranging regionally from 30.5% (156/512, London South) to 67.6% (223/330, Northern). Conclusion: Despite national and international guidelines, shortened AS courses are common and vary by region. Variation in course duration undermines current efforts to evaluate and improve perinatal care. Clinicians should review their AS practices and guidance and ensure accurate documentation of drug type and timing.

Background Children of consanguineous parents have a higher risk of infant and childhood mortality, morbidity and intellectual and developmental disability. Methods Using a UK based longitudinal cohort study we quantify differences according to the consanguinity status of children from birth to 10 in mortality, health care usage, two health and three educational outcomes. The cohort comprises 13727 children; 35.7% White British, 43.7% Pakistani heritage, and 20.8% are from other ethnic groups. Results Compared to children whose parents were not related children whose parents were first cousins were more likely to die by age 10 (odds ratio 2.81, 95% CI 1.82-4.35) to have higher rates of primary care appointments (incident rate ratio 1.39, 95% CI 1.34-1.45) and more prescriptions (incident rate ratio 1.61, 95% CI 1.50-1.73). Rates of hospital accident and emergency attendance (incident rate ratio 1.21,95% CI 1.12-1.30) and hospital outpatients’ appointments (incident rate ratio 2.21,95% CI 1.90-2.56) are higher. Children of first cousins have higher rates of speech/ language development difficulties (odds ratio 1.63, 95% CI 1.36-1.96) and learning difficulties (odds ratio 1.89, 95% CI 1.28-2.81). When they begin school they are less likely to reach phonics standards (odds ratio 0.73, 95% CI 0.63-0.84) and less likely to show a good level of development (odds ratio 0.61, 95% CI 0.54-0.68). At age 10 there are higher numbers with special educational needs from first cousin unions compared to all children whose parents are not blood relations (odds ratio 1.38, 95% CI 1.20-1.58). Effect sizes for consanguinity status are similar in univariable and multivariable models where a range of control variables are added. Conclusions There is higher childhood mortality and greater use of health care as well as higher rates of learning difficulties, speech and language development challenges and substantive differences in education outcomes in children whose parents are first cousins.

Background Ethnic inequalities in maternal and neonatal health in the UK are well documented. Concerns exist regarding the use of skin colour in neonatal assessments. Healthcare professionals should be trained to recognise symptoms of diverse skin tones, and comprehensive, and inclusive guidance is necessary for the safe assessment of all infants. Disparities in healthcare provision have been emphasised during the COVID-19 pandemic, and additional research is needed to determine whether such policies adequately address ethnic minority neonates. Methods A desktop search included searches of guidance produced for the United Kingdom (UK). Further searches of the Cochrane and World Health Organization (WHO) were used to identify any international guidance applicable in the UK context. Results Several policies and one training resource used descriptors ‘pink,’ ‘pale,’ ‘pallor,’ and ‘blue’ about neonatal skin and mucous membrane colour. No policies provided specific guidance on how these colour descriptors may appear in neonates with different skin pigmentation. Only the NICE guidance and HEE e-learning resource acknowledged the challenges of assessing jaundice in infants with diverse skin tones, while another guideline noted differences in the accuracy of bilirubin measurements for the assessment of jaundice. Three policies and one training resource advised against relying on visual observation of skin colour when diagnosing neonatal conditions. The training resource included images of ethnic minority neonates, although most images included white infants. Conclusions Inadequate consideration of ethnicity in UK policy and training perpetuates disparities, leading to inaccurate assessments. A review is needed for inclusivity in neonatal care, regardless of skin pigmentation.

Objectives To explore neonatal assessments that include an element of evaluating skin colour in neonates of black, Asian and minority ethnicities, focusing on the Apgar score, presence of cyanosis and presence of jaundice. Design We employed focused ethnography involving diverse healthcare professionals (HCPs) and parents or caregivers with Black, Asian, or ethnic minority children born in the last five years. Zoom interviews were performed following a semi-structured interview guide. Ethnographic data analysis was conducted using NVivo software. Results There was a lack of consistency in how HCPs applied the Apgar scores, which also varied from textbook guidelines. The use of pink as a skin colour descriptor for ethnic minority neonates created a divide among both parents and HCPs. HCPs relied more heavily on other elements of the Apgar score or infant breathing and crying at birth to gauge infant wellness. When identifying cyanosis, HCPs depend on specific body locations for accurate assessment of oxygenation, but the limitations of visual assessment are acknowledged. For jaundice, most HCPs recognised the difficulty in identifying the colour yellow in infants with darker skin tones. HCPs focussed on yellowing of the sclera and gums and other well-being assessments to detect jaundice. Some interviewed parents noticed jaundice in their infants before HCPs but felt they were not listened to when raising concerns. HCPs acknowledged the need for additional training to effectively assess the health of ethnic minority infants. Conclusion This study highlights disparities in neonatal health assessment from the perspectives of healthcare professionals and parents from diverse backgrounds. Varied practices in determining the Apgar score and recognising cyanosis and jaundice signal the need for standardised protocols, appropriate educational materials, and targeted training. Addressing these challenges is vital for equitable care, emphasising comprehensive training and bias mitigation efforts in maternal and neonatal healthcare.