Eva Loucaides, Dominic Carr, Neelakshi Ghosh, Stephanie Habermann, Rose Hartzenberg, George Lawson, Naomi Lin, Conan Lundy, Hamish Robertson, Sarah Sturrock, Rachel Thompson
{"title":"Research exposure in UK paediatric training: how do we address the gaps-experience from the London REACH network.","authors":"Eva Loucaides, Dominic Carr, Neelakshi Ghosh, Stephanie Habermann, Rose Hartzenberg, George Lawson, Naomi Lin, Conan Lundy, Hamish Robertson, Sarah Sturrock, Rachel Thompson","doi":"10.1136/archdischild-2024-326932","DOIUrl":"10.1136/archdischild-2024-326932","url":null,"abstract":"<p><p>Trainee-led Research Networks (TRNs) can mitigate against the lack of in-training academic opportunities by offering research experience, support and shared learning for paediatricians. The London Research, Evaluation and Audit for Child Health (REACH) Network, founded in 2021, has grown to involve a diverse group of 190 volunteer members at 28 London hospitals. Planning and delivery of a range of multisite projects bring not only many challenges but also a wealth of learning opportunities relating to research and quality improvement as well as leadership, management, education and fostering an accessible and equitable research culture. TRNs are an effective and valuable tool in improving the experience of trainees.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"256-264"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142339917","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christian Elias Meagher, Didu S Kariyawasam, Kristine A Elias Concepcion, Russell Dale, Kate Hetherington, Shekeeb Mohammad, Elizabeth Emma Palmer, Susan Woolfenden, Michelle Anne Farrar
{"title":"Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study.","authors":"Christian Elias Meagher, Didu S Kariyawasam, Kristine A Elias Concepcion, Russell Dale, Kate Hetherington, Shekeeb Mohammad, Elizabeth Emma Palmer, Susan Woolfenden, Michelle Anne Farrar","doi":"10.1136/archdischild-2024-327914","DOIUrl":"10.1136/archdischild-2024-327914","url":null,"abstract":"<p><strong>Objective: </strong>Parents and caregivers of children with neurological conditions express interest in new and developing treatments and trials; however, they have limited knowledge of, and access to, reliable information. This study aims to empower and equip decision-making and support communication in the application of advanced neurotherapeutics and personalised medicine, covering gene therapy, stem cell therapy, neurostimulation and neuroimmunotherapies.</p><p><strong>Design: </strong>A suite of online psychoeducational resources has been created and evaluated to establish implementation success. A codesign approach was incorporated in this mixed methods cross-sectional study.</p><p><strong>Setting: </strong>Quaternary children's hospital network.</p><p><strong>Patients: </strong>Across three phases, 105 parents of children with neurological conditions, clinicians and advocacy group representatives participated.</p><p><strong>Interventions: </strong>A suite of psychoeducational resources about advanced therapeutics in clinical trials was codeveloped with parents and evaluated.</p><p><strong>Main outcome measures: </strong>Acceptability, Appropriateness, and Feasibility of Intervention Measures, Preparedness for Decision-Making Scale, Decision Self-efficacy Scale and open-ended qualitative feedback.</p><p><strong>Results: </strong>The resources provide an acceptable, appropriate, credible and feasible source of information. Parents also established they help with preparedness and confidence in decision-making regarding the applications of neurotherapeutics.</p><p><strong>Conclusions: </strong>This study and its results are aligned with, and supports, the needs and preferences of caregivers of children with neurological conditions, promoting information provision, healthcare engagement and clinical decision-making. These resources will form a foundation for accurate and contemporary scientific knowledge that is distilled and available to a wide range of stakeholders.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"308-315"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142613844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Joanna Jane Garstang, Jenna Spry, Gayle Routledge, Anna Pease, Karen L Shaw, Sara Kenyon
{"title":"Developing a toolkit to support parents' involvement in child death review: an experience-based co-design study.","authors":"Joanna Jane Garstang, Jenna Spry, Gayle Routledge, Anna Pease, Karen L Shaw, Sara Kenyon","doi":"10.1136/archdischild-2024-327642","DOIUrl":"10.1136/archdischild-2024-327642","url":null,"abstract":"<p><strong>Background: </strong>Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best to engage parents. The aim of this study was to use experience-based co-design to create a toolkit to support parental involvement in CDR.</p><p><strong>Methods: </strong>A survey of English paediatric intensive care units (PICUs) and palliative care services explored practices and identified a diverse sample of sites for professional interviews. Bereaved parents were recruited through charities, hospitals and social media. Semistructured interviews were held with parents and professionals followed by co-design workshops to develop the toolkit.</p><p><strong>Results: </strong>There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care.21 multidisciplinary healthcare professionals were interviewed.23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed.10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers.The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.</p><p><strong>Conclusions: </strong>Co-design has successfully supported the development of a toolkit of resources in a sensitive area. It required considerable support from bereavement support organisations and researchers. Future evaluation is required.</p><p><strong>Trial registration number: </strong>ISRCTN14790455.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"276-282"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142794333","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"How can parents' experience of child death reviews be improved?","authors":"Peter Sidebotham","doi":"10.1136/archdischild-2024-328175","DOIUrl":"10.1136/archdischild-2024-328175","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"249-250"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143424702","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Claudia Heggie, Amrit Chauhan, Kara Gray-Burrows, Peter F Day, Bob Phillips
{"title":"\"It's like being chained up\": the oral mucositis experiences of children and young people with cancer, their parents, and healthcare professionals- a qualitative study.","authors":"Claudia Heggie, Amrit Chauhan, Kara Gray-Burrows, Peter F Day, Bob Phillips","doi":"10.1136/archdischild-2024-327529","DOIUrl":"10.1136/archdischild-2024-327529","url":null,"abstract":"<p><strong>Objective: </strong>The objective is to explore the experiences of children and young people (CYP) with cancer, their parents, and healthcare professionals (HCPs) involved in their care of oral mucositis.</p><p><strong>Design: </strong>A qualitative study was conducted. CYP with experience of mucositis were purposively sampled, aiming for diversity in age, sex and cancer diagnosis. HCPs were purposively sampled aiming for diversity in professional role and years of experience. Semi-structured interviews with CYP and their parents and focus groups with HCPs were conducted. Interviews were audio recorded and professionally transcribed. Anonymised transcripts underwent reflexive thematic analysis using an inductive essentialist approach. Codes were discussed and constant comparisons made to increase validity. Recruitment occurred alongside analysis until no new codes were identified.</p><p><strong>Results: </strong>27 participants were interviewed (8 CYP, 10 parents, 9 HCPs). CYP had diverse cancer diagnoses and were aged between 8 and 15 years. HCPs had diverse professional roles across medicine, dentistry, nursing, dental nursing, and play therapy with a mean of 7.4 years of experience in their individual role. Four themes were generated: (1) mucositis as a multifaceted, negative emotive experience, (2) being taken away from 'normality', (3) complex biopsychosocial impact on eating and (4) management of mucositis presents additional strain. Within these themes, multiple subthemes were generated and cross-cutting challenges in maintaining oral health were identified.</p><p><strong>Conclusion: </strong>Oral mucositis presents a significant challenge to CYP, families and HCPs during cancer treatment functionally, psychologically and socially, with an adverse impact on treatment experiences. Prevention of oral mucositis is a priority to these groups within supportive cancer care.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"287-294"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142725004","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Benjamin Allin, Timothy John Bradnock, Kirsty Brennan, John Buckell, Joe I Curry, Chris Gale, Nigel J Hall, Lisa Hinton, Jonathan Hodgkinson, Ingo Jester, Kokila Lakhoo, Nick Lansdale, Geraint J Lee, Anna-May Long, Alex MacDonald, Rema Ramakrishnan, Hemanshoo Thakkar, Gregor M Walker, Alicia White, Oliver Rivero-Arias, Simon Kenny, Marian Knight
{"title":"The patient's outcome, not the surgeon's opinion, defines surgical success.","authors":"Benjamin Allin, Timothy John Bradnock, Kirsty Brennan, John Buckell, Joe I Curry, Chris Gale, Nigel J Hall, Lisa Hinton, Jonathan Hodgkinson, Ingo Jester, Kokila Lakhoo, Nick Lansdale, Geraint J Lee, Anna-May Long, Alex MacDonald, Rema Ramakrishnan, Hemanshoo Thakkar, Gregor M Walker, Alicia White, Oliver Rivero-Arias, Simon Kenny, Marian Knight","doi":"10.1136/archdischild-2024-327768","DOIUrl":"10.1136/archdischild-2024-327768","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"324-326"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142370826","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"How can biomedical engineering have an impact on antimicrobial resistance?","authors":"","doi":"10.1136/archdischild-2025-328762","DOIUrl":"https://doi.org/10.1136/archdischild-2025-328762","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":"110 4","pages":"282"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143662329","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"E-cigarettes: WHO knows best.","authors":"Ross John Langley, Elif Dagli, Andrew Bush","doi":"10.1136/archdischild-2024-327395","DOIUrl":"10.1136/archdischild-2024-327395","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"316-317"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142103769","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Joanna Jane Garstang, Merve Tosyali, Marivjena Menka, Peter S Blair
{"title":"Incidence of sudden unexplained death in childhood for children aged 1-14 years in England and Wales during 2001-2020: an observational study.","authors":"Joanna Jane Garstang, Merve Tosyali, Marivjena Menka, Peter S Blair","doi":"10.1136/archdischild-2024-327840","DOIUrl":"10.1136/archdischild-2024-327840","url":null,"abstract":"<p><strong>Objective: </strong>The objective is to determine the incidence of sudden unexplained death in childhood (SUDC) for children aged 1-14 years in England and Wales during 2001-2020.</p><p><strong>Design: </strong>Observational study using official national statistics on death registrations and child population.</p><p><strong>Setting: </strong>England and Wales.</p><p><strong>Patients: </strong>Children dying of SUDC, aged 1-14 years, registered as International Classification of Disease version 10 codes R95-99.</p><p><strong>Main outcome measures: </strong>Incidence of SUDC, proportion of child mortality due to SUDC.</p><p><strong>Results: </strong>A total of 582 children aged 1-14 years died of SUDC, 450 (77.3%) deaths were in children aged 1-4 years, 55 (9.5%) in those aged 5-9 years and 77 (13.2%) in those aged 10-14 years. The number of SUDC was relatively stable with a mean of 29 cases per year (range 21-38, SD 4.2). Overall child mortality fell from 1482 deaths in 2001 to 826 in 2020. The incidence of SUDC for children aged 1-14 years ranged between 0.002 and 0.004 per 1000. The relative proportion of child mortality due to SUDC increased from 1.96% of all child deaths in 2001 to 3.03% in 2020 (p=0.103), SUDC accounted for 5.8% of deaths of children aged 1-4 years by 2020. At all ages, SUDC was more common in male children than female children.</p><p><strong>Conclusion: </strong>The incidence of SUDC has remained static despite overall child mortality almost halving in the last two decades. SUDC is now more widely recognised due to improved investigation, but there has been limited research into SUDC; potential causes and associated risk factors remain unknown. As the relative proportion of child deaths due to SUDC increases, child health professionals must be aware of SUDC to support bereaved families.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"270-275"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142666946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Correction for 'Respiratory viral testing for young febrile infants presenting to emergency care: a planned secondary analysis of the febrile infants diagnostic assessment and outcome (FIDO) prospective observational cohort study'.","authors":"","doi":"10.1136/archdischild-2024-327567.corr1","DOIUrl":"10.1136/archdischild-2024-327567.corr1","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"327"},"PeriodicalIF":4.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142817047","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}