[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100600818":3},{"organization":4,"armGroups":7,"interventions":14,"overallOfficials":18,"centralContacts":44,"locations":53,"responsibleParty":118,"collaborators":120,"id":124,"slug":125,"hasResults":126,"nctId":127,"briefTitle":128,"officialTitle":129,"acronym":130,"eligibilityCriteria":131,"healthyVolunteers":126,"sex":132,"minAge":133,"maxAge":10,"enrollmentInfo":134,"targetDuration":10,"studyType":137,"phases":10,"briefSummary":138,"conditions":139,"keywords":145,"overallStatus":151,"whyStopped":10,"lastUpdateSubmitDate":152,"lastUpdatePostDateStruct":153,"startDateStruct":156,"completionDateStruct":158,"leadSponsor":160,"locationsCount":161},{"fullName":5,"class":6},"King's College London","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Interview and Workshop Participants",null,"Interview and workshop participants will be formed from the following inclusion criteria:\n\nChildren and Young People (CYP):\n\n* Aged 5-17 years\n* Diagnosed with a life-limiting condition (as defined by Together for Short Lives)\n\nParents\u002FCarers:\n\n* Parent\u002Fcarer of a child aged 0-17 years with a life-limiting condition\n* Bereaved parent, where bereavement occurred ≥3 months ago\n\nProfessionals (Health, Social Care, Education):\n\n* Working with CYP with life-limiting conditions for at least 6 months\n* Includes medical, nursing, allied health, social care, and educational professionals\n\nWorkshop Participants:\n\n* Any of the above stakeholder types\n* Must be able to provide informed consent or assent",[13],"Other: Children and young people with life-limiting conditions, their parents\u002Fcarers, and professionals across healthcare, education, and social care sectors.",[15],{"type":6,"name":16,"description":16,"armGroupLabels":17,"otherNames":10},"Children and young people with life-limiting conditions, their parents\u002Fcarers, and professionals across healthcare, education, and social care sectors.",[9],[19,23,25,28,31,34,37,40,42],{"name":20,"affiliation":21,"role":22},"Fliss Murtagh","Hull York Medical School","PRINCIPAL_INVESTIGATOR",{"name":24,"affiliation":5,"role":22},"Mary Baginsky",{"name":26,"affiliation":27,"role":22},"Diane Sellers","Chailey Clinical Services, Sussex Community NHS Foundation Trust",{"name":29,"affiliation":30,"role":22},"Lucy Coombes","Royal Marsden NHS Foundation Trust",{"name":32,"affiliation":33,"role":22},"Mary Salama","Birmingham Children's Hospital",{"name":35,"affiliation":36,"role":22},"Bobbie Farsides","Brighton and Sussex Medical School",{"name":38,"affiliation":39,"role":22},"Gabriella L Walker","Patient and Public Representative",{"name":41,"affiliation":5,"role":22},"Pru Holder",{"name":43,"affiliation":5,"role":22},"Abinaya Chandrasekar",[45,51],{"name":46,"role":47,"phone":48,"phoneExt":49,"email":50},"Richard Harding, PhD","CONTACT","02078485518","+44","richard.harding@kcl.ac.uk",{"name":52,"role":47,"phone":10,"phoneExt":10,"email":50},"Lorna Fraser, PhD",[54,69,81,95,108],{"facility":33,"status":10,"city":55,"state":10,"zip":56,"country":57,"countryCode":58,"cosmosGeoPoint":59,"geoPoint":64,"contacts":65},"Birmingham","B46NH","United Kingdom","UK",{"type":60,"coordinates":61},"Point",[62,63],-1.89983,52.48142,{"lat":63,"lon":62},[66],{"name":32,"role":47,"phone":67,"phoneExt":10,"email":68},"+44 121 333 8163","mary.salama@nhs.net",{"facility":27,"status":10,"city":70,"state":10,"zip":71,"country":57,"countryCode":58,"cosmosGeoPoint":72,"geoPoint":76,"contacts":77},"Chailey","BN84JN",{"type":60,"coordinates":73},[74,75],-0.01896,50.95757,{"lat":75,"lon":74},[78],{"name":26,"role":47,"phone":79,"phoneExt":10,"email":80},"+44 1825 722112","diane.sellers@nhs.net",{"facility":82,"status":10,"city":83,"state":10,"zip":84,"country":57,"countryCode":58,"cosmosGeoPoint":85,"geoPoint":89,"contacts":90},"Shooting Star Children's Hospices","Hampton","TW12 3RA",{"type":60,"coordinates":86},[87,88],-0.36701,51.41334,{"lat":88,"lon":87},[91],{"name":92,"role":47,"phone":93,"phoneExt":10,"email":94},"Anna Karenia Anderson","+44 1483 230 960","annakarenia.anderson@nhs.net",{"facility":96,"status":10,"city":97,"state":10,"zip":98,"country":57,"countryCode":58,"cosmosGeoPoint":99,"geoPoint":103,"contacts":104},"Guy's and St Thomas' NHS Foundation Trust","London","SE1 9RT",{"type":60,"coordinates":100},[101,102],-0.12574,51.50853,{"lat":102,"lon":101},[105],{"name":52,"role":47,"phone":106,"phoneExt":10,"email":107},"+44 2078485518","lorna.fraser@kcl.ac.uk",{"facility":109,"status":10,"city":97,"state":10,"zip":110,"country":57,"countryCode":58,"cosmosGeoPoint":111,"geoPoint":113,"contacts":114},"Royal Marsden Hospital","SW36JJ",{"type":60,"coordinates":112},[101,102],{"lat":102,"lon":101},[115],{"name":29,"role":47,"phone":116,"phoneExt":10,"email":117},"+44 20 8661 3625","lucy.coombes@rmh.nhs.uk",{"type":119,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[121],{"name":122,"class":123},"National Institute for Health Research, United Kingdom","OTHER_GOV","100600818","complexity-in-health-education-and-social-support-for-children-and-young-people-with-life-limiting-conditions-100600818",false,"NCT07102433","Complexity in Health, Education, and Social Support for Children and Young People With Life-limiting Conditions.","CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions: Establishing a Multisectoral Collaboration and Conceptual Framework to Advance Evidence and Practice.","CHESS","Stage 1 - Interviews\n\nInclusion Criteria:\n\n* Children (5-17 years) with any life-limiting condition defined using the UK Together for Short Lives widely adopted 4 categories of life-limiting\u002Flife-threatening conditions among children.\n* Parents\u002Fcarers of children (0-17 years old) with a life-limiting conditions.\n* Bereaved parents of a child who had a life-limiting condition (at least 3 months since bereavement).\n* Healthcare professionals (medicine, nursing, allied health professionals), social care providers, education teaching and therapy staff with \\> 6 months experience of caring for children with life-limiting conditions.\n\nExclusion Criteria:\n\n* Children unable to communicate via an interview, using 'draw and talk' or play methods, Talking MatsTM, or via their parents.\n* Children that speak languages not supported by NHS translation services.\n* Any child or young person for whom the PI believes participation in the study may induce undue psychological distress.\n* Parents\u002Fcarers are unable to provide consent\u002Fassent to participate in interviews.\n* Parents\u002Fcarers that speak languages not supported by NHS translation services.\n* Parents who are recently bereaved (\\\u003C3 months).\n* Any parent\u002Fcarer for whom the PI believes participation in the study may induce undue psychological distress (e.g. parents of children who may be receiving end-of-life care).\n* Professionals with \\\u003C6 months experience of caring for children with life-limiting conditions.\n\nStage 2 - Workshops\n\nInclusion criteria:\n\n* Parents or carers of children with a life-limiting condition (0-17 years old).\n* Bereaved parents of a child who had a life-limiting condition (at least 3 months since bereavement).\n* Researchers working with or in the field of complexity in children with life-limiting conditions.\n* Professionals across child health, social care, and education with experience of working with children with life-limiting conditions for \\>6 months.\n\nExclusion criteria:\n\n* Professionals across child health, social care, and education with \\\u003C6 months of experience working with children with life-limiting conditions.\n* Parents, carers, or professionals that are unable to provide consent or assent.\n* Children with life-limiting\u002Flife-threatening conditions will not be included in the workshops\n* Parents who are recently bereaved (\\\u003C3 months) of a child who had a life-limiting condition.","ALL","5 Years",{"count":135,"type":136},170,"ESTIMATED","OBSERVATIONAL","Children and young people (CYP) with life-limiting conditions represent a growing population with complex care needs that span health, education, and social care systems. These children often have multiple diagnoses, rely on medical technologies, and experience prolonged trajectories of illness. Despite this, care remains fragmented, services are poorly integrated, and definitions of \"complexity\" are variable, inconsistent, and inadequately reflect the lived experience of families and the perspectives of professionals.\n\nThe CHESS (Complexity in Health, Education, and Social Support) study aims to develop a shared, evidence-informed understanding of \"complexity\" in the context of CYP with life-limiting conditions. The study will be delivered by a multi-disciplinary, multisectoral research team and is funded by a National Institute for Health and Care Research (NIHR) Programme Development Grant. This research will provide the foundational work to inform the design and implementation of a future NIHR Programme Grant focused on the development and testing of a child-centred, nationally applicable case mix classification system to support integrated multisector care and resource allocation.\n\nThis qualitative study involves two stages. Stage 1 consists of semi-structured interviews with (i) CYP aged 5-17 years with a life-limiting condition, (ii) parents\u002Fcarers (including bereaved parents and parents of children aged under 5 years), and (iii) professionals across healthcare, social care, and education sectors. These interviews aim to elicit stakeholder understandings of \"complexity,\" how it is experienced and enacted in care, and the implications for service access, coordination, and outcomes.\n\nStage 2 comprises a series of stakeholder workshops to review, refine, and synthesise findings from Stage 1 and a parallel realist review. Using consensus methods including the Nominal Group Technique, the workshops will co-develop a cross-sectoral conceptual definition of \"complexity\" and produce a logic model to guide integrated care delivery for this population.\n\nThe CHESS study seeks to address a critical evidence gap in how complexity is understood, measured, and supported across systems. By incorporating the voices of children, families, and professionals across sectors, this study will generate new conceptual clarity, build a foundation for improved outcomes, and contribute directly to the national agenda on equity, quality, and integration in paediatric palliative and complex care.",[140,141,142,143,144],"Complex Care","Medical Complexity","Pediatrics","Life-limiting Illness","Life-threatening Illness",[146,147,148,149,150],"Medical complexity","Pediatric palliative care","Life-limiting conditions","Life-threatening conditions","Children and young people","NOT_YET_RECRUITING","2025-11-13",{"date":154,"type":155},"2025-11-14","ACTUAL",{"date":157,"type":136},"2025-12-01",{"date":159,"type":136},"2026-07-31",{"name":5,"class":6},5]