BMJ Paediatrics Open最新文献

{"title":"Comparative accuracy of sleep disturbance questionnaires in children with autism spectrum disorder: a receiver operating characteristic study.","authors":"Batuhan Yüksel, Mert Dogan, Koray Kara, Ozgun Kaya Kara","doi":"10.1136/bmjpo-2025-004097","DOIUrl":"10.1136/bmjpo-2025-004097","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this study was to investigate the comparative effectiveness of various sleep and wakefulness scales used in children and their usefulness for children with autism spectrum disorder (ASD).</p><p><strong>Design: </strong>Cross-sectional observational study.</p><p><strong>Setting: </strong>The study was conducted at the Department of Child and Adolescent Psychiatry, University of Health Sciences Research and Training Hospital, Antalya, Türkiye, which serves as a regional referral centre for children and adolescents with developmental and behavioural disorders.</p><p><strong>Participants: </strong>A total of 230 children participated in the study, including 155 children diagnosed with ASD and 75 typically developing peers, aged between 4 and 18 years.</p><p><strong>Primary outcome measures: </strong>Sleep-wake disorders were assessed using five questionnaires: the Children's Sleep Habits Questionnaire (CSHQ), Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD), Paediatric Daytime Sleepiness Scale (PDSS), Paediatric Sleep Questionnaire (PSQ) and Sleep Disturbance Scale for Children (SDSC). These tools evaluated sleep patterns, daytime sleepiness, and sleep-related behavioural problems based on caregiver reports.</p><p><strong>Results: </strong>The mean age of children with ASD and the typically developing peer group was 9.0±3.69 years and 9.07±4.25 years respectively. The CSHQ, ESS-CHAD, PDSS, PSQ and SDSC all demonstrated discriminant validity and internal consistency in the assessment of sleep-wake disorders in children with ASD (p<0.05, Cronbach's alpha >0.60). The CSHQ and SDSC showed similar levels of diagnostic accuracy in detecting sleep disorders. The PSQ had a high positive predictive value, the PDSS demonstrated a high negative predictive value and the ESS-CHAD showed a high level of agreement.</p><p><strong>Conclusions: </strong>A combination of tools such as the CSHQ, ESS-CHAD, PDSS, PSQ and SDSC may be useful for assessing sleep-wake disorders in children with ASD.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-05-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13150884/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147833317","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Multicentre cohort study on the course of paediatric familial Mediterranean fever in the aftermath of the 2023 earthquake.","authors":"Veysel Cam, Siddika Songul Yalcin, Ezgi Deniz Batu, Hatice Melisa Kacmaz, Nesibe Gökçe Kocamaz, Özge Günal, Eda Kayhan, Burcu Bozkaya, Semanur Taşkın, Vildan Gungorer, Elif Kılıç Konte, Gulsah Pirim, Dilara Ünal, Semanur Ozdel, Oya Koker, Aysenur Pac Kısaarslan, Rabia Miray Kisla Ekinci, Şeyda Dogantan, Selcan Demir, Kubra Ozturk, Hatice Adıgüzel Dundar, Ozge Basaran, Ayşe Balat, Betul Sozeri, Ozgur Kasapcopur, Yelda Bilginer, Seza Ozen","doi":"10.1136/bmjpo-2025-003818","DOIUrl":"https://doi.org/10.1136/bmjpo-2025-003818","url":null,"abstract":"<p><strong>Objectives: </strong>Türkiye was struck by earthquakes on 6 February 2023. Emerging evidence links psychosocial stress and environmental insults to inflammasome activation. This multicentre study investigated whether the earthquake was associated with changes in the disease course among paediatric patients with familial Mediterranean fever (FMF).</p><p><strong>Methods: </strong>Data were collected from 963 paediatric FMF patients (<18 years) across fifteen centres, including three located in the earthquake zone. Monthly attack counts were analysed over an 18-month period (February 2022-August 2023). Analyses were stratified by earthquake exposure and colchicine access (outside the earthquake area; earthquake area with sufficient access; earthquake area with limited access for the first 2 weeks). Primary analyses used multilevel interrupted time-series and difference-in-differences Poisson models for monthly attack counts, and secondary analyses used mixed-effects logistic regression for monthly attack presence (≥1 attack). Both models were stratified by colchicine access and adjusted for clinical covariates.</p><p><strong>Results: </strong>In the overall cohort, the February 2023 earthquake was associated with a 35% immediate rise in monthly FMF attack frequency (incidence rate ratio (IRR)=1.35, 95% CI 1.15 to 1.59). This effect was markedly amplified within the earthquake zone: attack frequency increased 2.16-fold in regions with adequate colchicine access (IRR=2.16, 95% CI 1.49 to 3.12) and 3.56-fold in regions with limited access (IRR=3.56, 95% CI 2.79 to 4.55). A significant post-earthquake decline in attacks followed (monthly trend IRR=0.93, 95% CI 0.89 to 0.98), with the fastest recovery in limited-access regions (IRR=0.83, 95% CI 0.78 to 0.89). Findings were consistent in the secondary logistic model.</p><p><strong>Conclusion: </strong>FMF patients in the earthquake zone experienced a marked but transient escalation in disease activity after the disaster, with the strongest impact in regions with limited medication access. These findings suggest that not just access to treatment but also psychosocial stress or possibly environmental factors may cause activation of such diseases through the trigger of pyrin-inflammasome.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141018/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147833343","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare burden of bronchopulmonary dysplasia among very preterm infants in China: a cohort study.","authors":"Zhicheng Zhu, Lin Yuan, Jie Yang, Siyuan Jiang, Yun Cao, Jiao Yang, Yun Zhang, Yan Mo, Chao Chen, Huayan Zhang, Jianguo Zhou","doi":"10.1136/bmjpo-2025-004259","DOIUrl":"https://doi.org/10.1136/bmjpo-2025-004259","url":null,"abstract":"<p><strong>Objective: </strong>To assess the healthcare burden of bronchopulmonary dysplasia (BPD) among very preterm infants in China.</p><p><strong>Design: </strong>A prospective cohort study between 2022 and 2023.</p><p><strong>Setting: </strong>Chinese Neonatal Network (CHNN) participating centres.</p><p><strong>Patients: </strong>Infants with gestational age <32 weeks admitted to CHNN neonatal intensive care units.</p><p><strong>Main outcome measures: </strong>A composite rate of BPD or mortality at 36 weeks' postmenstrual age (PMA), major comorbidities, clinical resources utilisation and outcome at discharge. BPD severity was classified by Jensen <i>et al</i>'s criteria.</p><p><strong>Results: </strong>Among 17 793 eligible infants, 568 (3.2%) infants died before 36 weeks' PMA, 1729 (9.7%) were discharged against medical advice before 36 weeks' PMA, 9895 (55.6%) were classified as no BPD, 2751 (15.5%) developed Grade 1 BPD, 2634 (14.8%) developed Grade 2 BPD and 216 (1.2%) developed Grade 3 BPD. Infants with BPD had significantly longer hospital stays than those without BPD (median (IQR), 67 (52-84) vs 44 (34-56) days) and incurred higher total hospitalisation charges (median (IQR), 127 (91-177) vs 73 (52-103) thousand CNY) and charge per day (median (IQR), 1975 (1638-2361) vs 1714 (1409-2048) CNY). Mortality at discharge increased with BPD severity, with rates of 0.2% (18/9895) for infants without BPD, 0.5% (15/2751) for Grade 1 BPD, 2.1% (56/2634) for Grade 2 and 26.9% (58/216) for Grade 3. Similarly, the rates of major comorbidities and the need for home oxygen therapy increased with BPD severity.</p><p><strong>Conclusions: </strong>Greater BPD severity was associated with increased comorbidities, higher in-hospital mortality and greater utilisation of healthcare resources. These findings emphasised the ongoing need to develop cost-saving strategies to reduce the risk and severity of BPD in this vulnerable population and improve overall care.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141234/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147833290","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Future perspectives on the use of molecular assays for pathogen identification in neonatal sepsis: a survey study among members of the European Society for Paediatric Infectious Diseases.","authors":"Jip Groen, Martijn van der Kuip, Marc A Benninga, Tim de Meij, Hendrik J Niemarkt","doi":"10.1136/bmjpo-2026-004600","DOIUrl":"10.1136/bmjpo-2026-004600","url":null,"abstract":"","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141089/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147811097","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Challenges during clinical lactation studies investigating medicines exposure: experiences from the UmbrelLACT study - a contribution from the ConcePTION project.","authors":"Martje Van Neste, Nina Nauwelaerts, Michael Ceulemans, Kristel Van Calsteren, An Eerdekens, Pieter Annaert, Anne Smits, Karel Allegaert","doi":"10.1136/bmjpo-2026-004603","DOIUrl":"10.1136/bmjpo-2026-004603","url":null,"abstract":"<p><strong>Background: </strong>Clinical lactation studies are valuable to guide pharmacotherapy during breastfeeding, but are not easy to conduct. This paper reports on challenges and mitigation strategies while conducting the UmbrelLACT study, a prospective observational lactation study.</p><p><strong>Methods: </strong>The UmbrelLACT study includes breastfeeding women taking a relevant medicine (eg, absence of safety evidence during lactation) and after feasibility verification (eg, access to bioanalytical assay). Participants collect human milk samples at home over 24 hours. Optionally, maternal and infant blood samples are collected, together with self-reported questionnaires on clinical maternal and child variables. Medicine concentrations and estimated infant exposure (eg, daily and relative infant dose) are determined.</p><p><strong>Results: </strong>Regarding informed consent, study objectives should be carefully phrased to prevent pharmacotherapy avoidance due to a lack of safety information. On sample collection, the study team should provide all necessary materials if not available at home, including an electric breast pump. Due to the milk expressions over 24 hours, the infant might miss soothing moments. This can be mitigated by giving the breast after expressing the milk for study purposes, creating alternative soothing moments. Sample handling might be complicated by additional steps needed for certain compounds. A bioanalysis method should be available or developed for the milk matrix. Finding the assay might be challenging, but it can be facilitated by a network of specialised labs. In the UmbrelLACT study, pharmacokinetic values are collected fragmentarily. This results in the need for data pooling with data from the literature. In contrast, at-home sampling and multidisciplinary collaboration are clear strengths.</p><p><strong>Conclusions: </strong>It is feasible to tailor the approach to each participant and compound, to minimise the burden on the patient and their family. While there are limitations related to the pragmatic design, the opportunities of this lactation study outweigh the challenges to result in clinically significant scientific observations.</p><p><strong>Trial registration number: </strong>NCT06042803.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141100/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147811088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"BronQ Family: assessing the long-term impact of Bronchopulmonary Dysplasia on affected families' health-related quality of life - protocol of a multi-country study.","authors":"Ilona Trautmannsberger, Vanessa Wydrin, Ayse Düzenli, Lara Breunig, Silke Mader, Christina Tischer, Julia Feiler","doi":"10.1136/bmjpo-2025-004252","DOIUrl":"10.1136/bmjpo-2025-004252","url":null,"abstract":"<p><strong>Introduction: </strong>Bronchopulmonary Dysplasia (BPD) is a frequent chronic complication of preterm birth. While clinical outcomes have been widely studied, evidence on the long-term impact on parents and caregivers - particularly beyond early childhood and across different countries - remains limited. The BronQ Family study investigates the health-related quality of life (HRQoL) and lived experiences of caregivers of children and adolescents with BPD.</p><p><strong>Methods and analysis: </strong>This multinational, cross-sectional study is conducted in six European countries and the United States. Parents and primary caregivers of preterm-born children (<37 weeks' gestation) under 18 years of age are recruited through international parent networks, healthcare professionals and social media. Data collection takes place between September 2025 and February 2026 via an online questionnaire including socio-demographic characteristics, child health status, caregiver HRQoL (Paediatric Quality of Life Inventory Family Impact Module), health literacy, support structures and economic burden. Group allocation (BPD vs comparison group) is based on reported diagnosis and proxy indicators of neonatal respiratory support. Analyses include descriptive statistics, regression modelling and subgroup comparisons; qualitative responses will be analysed using structured content methods.</p><p><strong>Ethics and dissemination: </strong>This study received a waiver by the Ethics Committee of Maastricht University Medical Center+, the Netherlands (MECT 2025-0285). Informed consent is obtained electronically, and data are anonymised and securely stored. Results will be shared with the general public and disseminated through peer-reviewed publications, conferences and stakeholder organisations.</p><p><strong>Trial registration number: </strong>NCT07134387.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141182/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147811102","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Global Study on Newborn HOspitalization and Parental Experiences (HOPE): rationale and design of a multinational cross-sectional mixed-methods online survey.","authors":"Julia Hoffmann, Ruth Kemper, Helmut Hummler, Ayse Düzenli, Luc J I Zimmermann, Silke Mader, Christina Tischer","doi":"10.1136/bmjpo-2025-003902","DOIUrl":"10.1136/bmjpo-2025-003902","url":null,"abstract":"<p><strong>Introduction: </strong>Newborns who are born too soon, too small or sick are a vulnerable group who require special/high-dependency/intensive care after birth. Infant and Family-Centred Developmental Care (IFCDC) is an integrated healthcare approach that prioritises and values parental/familial involvement and participation by fostering competencies in essential newborn care skills and thus parental empowerment. There is a paucity of data globally on the IFCDC practice and the challenges faced by parents/caregivers during hospitalisation and post-discharge and the potential country-specific support.</p><p><strong>Objective: </strong>The primary objective of the HOPE study (Global Study on Newborn HOspitalization and Parental Experiences) is to assess parents'/caregivers' experiences, needs and concerns during newborn hospitalisation, barriers and facilitators in IFCDC practice and the extent of social and governmental support across multiple countries.</p><p><strong>Methods and analysis: </strong>This study is an observational, cross-sectional, mixed-methods, multinational, multilingual online survey that will target parents/caregivers of infants requiring neonatal special/intensive care after birth who are born on/after 1 January 2023. The questionnaire will collect data on parents'/caregivers' experiences related to IFCDC practice, social and governmental barriers and facilitators. The questionnaire will be designed using qualitative interviews with parents, expert advice from >80 multiprofessional international experts and parent representatives and data from a pre-testing. In a two-stage approach beginning with high-priority, followed by lower-priority questions, the instrument will retrospectively collect self-reported data using single-answer, multiple-choice and open-ended questions. Quantitative data will be analysed descriptively and using subgroup comparisons and qualitative data will be examined using thematic content analysis. The survey access link will be distributed by the Global Foundation for the Care of Newborn Infants and the HOPE study network.</p><p><strong>Discussion: </strong>Results will provide information related to parents'/caregivers' experiences, the extent of IFCDC implementation, and social and governmental support measures worldwide. Country-specific analyses will enable between country comparisons, identify transferable care practices and recommendations for action.</p><p><strong>Trial registration number: </strong>NCT06827028.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141155/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147811083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Association of red blood cell transfusions with bronchopulmonary dysplasia in preterm infants: a retrospective cohort study.","authors":"Xue-Song Peng, Jian-Hui Wang, Yuan-Qi Yang, Pu-Sheng Wen, Bo-Lin He, Yuan Shi","doi":"10.1136/bmjpo-2025-004058","DOIUrl":"10.1136/bmjpo-2025-004058","url":null,"abstract":"<p><strong>Background: </strong>Bronchopulmonary dysplasia (BPD) is the most common pulmonary complication in preterm neonates. Emerging evidence links red blood cell (RBC) transfusions to increased BPD risk.</p><p><strong>Methods: </strong>We conducted a retrospective cohort study of all infants of extremely low birth weight (ELBW) admitted to our NICU from January 2021 to December 2023. Infants enrolled within 7 days of birth were followed until 36 weeks' postmenstrual age (PMA) or until discharge or death-whichever came first. We extracted data on RBC transfusions, baseline characteristics and BPD diagnosis from validated electronic health records. To minimise confounding, we applied propensity score matching (PSM), overlap weighting (OW), multivariable logistic regression (adjusted for prespecified covariates), and restricted cubic spline (RCS) regression to assess nonlinear dose-response relationships.</p><p><strong>Results: </strong>Among 746 very low birth weight (VLBW) infants, BPD incidence was 35.2% (263/746). Before PSM, BPD occurred in 48.3% (224/464) of transfused infants vs 13.8% (39/282) of non-transfused infants (unadjusted OR=5.81; 95% CI: 3.96 to 8.53; p<0.001). After PSM (173 matched pairs), BPD remained significantly higher in the transfused group (39.3% vs 19.6%; adjusted OR=2.97; 95% CI: 1.76 to 5.04; p<0.001). OW yielded consistent results (OR=2.53; 95% CI: 1.64 to 3.91; p<0.001). In transfused infants (n=464), RCS regression showed a nonlinear association between timing of first transfusion and BPD risk (p=0.03). Neither total transfusion count nor blood storage duration correlated with BPD.</p><p><strong>Conclusions: </strong>RBC transfusions are linked to a greater risk of BPD in preterm infants, with the timing of the initial transfusion having a nonlinear effect on the development of BPD. These findings highlight the need for further investigation into optimal transfusion strategies to mitigate BPD risk in this vulnerable population.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141229/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147762042","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Lived experiences of healthcare personnel in supporting parents around neonatal death: encounters, challenges and meaning.","authors":"Stuti Pant, Michael P Kelly, Maria Moreno Morales, Sudhin Thayyil, Tina Lavender","doi":"10.1136/bmjpo-2025-004247","DOIUrl":"10.1136/bmjpo-2025-004247","url":null,"abstract":"<p><strong>Objective: </strong>To explore healthcare personnel's (HCP) lived experiences of caring for dying newborns and supporting bereaved parents in neonatal intensive care unit (NICU), drawing on relational, ethical and organisational factors.</p><p><strong>Design: </strong>Qualitative study using hermeneutic phenomenology. Semistructured, in-depth interviews analysed thematically to interpret the meanings embedded in participants' narratives.</p><p><strong>Setting: </strong>Three tertiary NICUs in the UK.</p><p><strong>Participants: </strong>Eight female HCP (five nurses, three doctors) with 3-20 years' (median=12 years) NICU experience.</p><p><strong>Results: </strong>Experiences were strongly shaped by temporality and clinical trajectory. <i>Expected</i> deaths (gradual decline) enabled preparation, continuity of carer and opportunities for closeness and memory-making, whereas <i>unexpected</i> deaths (sudden deterioration) heightened moral distress, complicated communication and constrained what could be offered to families. Four themes described how optimal experiences were pursued: (1) facilitating parent-infant closeness, (2) providing comprehensive family support, (3) communication and interpersonal engagement and (4) an emotionally intense experience for HCPs.The study revealed an overarching phenomenon-<i>creating an optimal experience for parents</i> as an implicit coping mechanism for HCP. As they cared for a dying newborn and its family, it helped them achieve a sense of accomplishment as well as the strength to power through the distress and anguish.</p><p><strong>Conclusions: </strong>The study highlights the relational foundation of neonatal end-of-life care, showing that HCPs' well-being and quality of parental support and care provided are closely linked. Recognising this interdependence may inform training, supervision and organisational design to strengthen compassionate and sustainable NICU bereavement care.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141010/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147761998","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Shifting the narrative: reframing paediatric palliative care to enable earlier engagement.","authors":"Claire Elizabeth Stewart, Chiara Vare, Tara Kerr-Elliott, Tracy Rennie, Cheryl Githinji, Emily Skinner, Emily Titherington, Ella Aidoo","doi":"10.1136/bmjpo-2025-004413","DOIUrl":"https://doi.org/10.1136/bmjpo-2025-004413","url":null,"abstract":"<p><strong>Background: </strong>Paediatric palliative care (PPC) provides holistic support for babies, children and young people with chronic and complex conditions and their families when facing uncertainty about the future. Although early PPC involvement improves symptom management, quality of life and shared decision-making, referral often occurs late. Misconceptions that equate PPC with end-of-life care, alongside clinicians' discomfort and concerns about diminishing hope, contribute to these delays. Communication is a modifiable barrier, and applying framing science may help clinicians introduce PPC earlier and with greater confidence. The aim of this paper is to outline evidence-informed framing strategies that support clearer, more constructive communication about PPC and encourage earlier engagement with palliative care services.</p><p><strong>Methods: </strong>This narrative review synthesised literature relating to referral practices, professional barriers and communication in PPC alongside relevant insights from cognitive psychology and communication science. A structured search of MEDLINE, CINAHL and PsycINFO was conducted. Published narrative perception research examining public understanding of PPC was incorporated as contextual evidence. Findings were integrated using a narrative synthesis approach guided by Scale for the Assessment of Narrative Review Articles principles.</p><p><strong>Results: </strong>Evidence indicates that referral timing is influenced not only by clinical uncertainty and systemic barriers but also by entrenched narratives surrounding palliative care. Studies of paediatric consultations demonstrate that variation in communication approaches can contribute to misaligned expectations and delayed engagement. Framing science suggests that intentional language, metaphor and narrative structure can reshape understanding, reduce discomfort and promote more constructive mindsets.</p><p><strong>Conclusions: </strong>Language and framing strongly shape perceptions of PPC and influence referral behaviour. Consistent use of evidence-informed framing strategies can help clinicians communicate more clearly and compassionately about PPC, reduce discomfort around referral conversations and support earlier access to services. Embedding these approaches across clinical teams, training programmes and organisations may contribute to more equitable, timely and family-centred palliative care.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"10 1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13110711/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147762056","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}