{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T12:31:35Z","timestamp":1789129895479,"version":"build-2803163510"},"reference-count":93,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100009130","name":"Programme Development Grants","doi-asserted-by":"publisher","award":["NIHR207608"],"award-info":[{"award-number":["NIHR207608"]}],"id":[{"id":"10.13039\/501100009130","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Children and young people with life-limiting conditions require input from health, education and social care. Despite consensus among stakeholders that service-integration is necessary, it is not clear how models of integrated care delivery can benefit children and their families.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>\n                      To determine\n                      <jats:italic toggle=\"yes\">how, why, and under what circumstances integrated multisectoral assessment and care is achieved for children with life-limiting conditions?<\/jats:italic>\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>We conducted a realist review according to RAMESES guidelines (PROSPERO: CRD420250653996).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Data Sources:<\/jats:title>\n                    <jats:p>Iterative searches of peer-reviewed and grey literature were conducted between February and March 2025. We included documents that explain contexts and mechanisms by which multisectoral care might lead to optimal outcomes for children.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>From 49 documents, we developed nine CMOCs representing two themes: (1) needs of children and families, and (2) agencies and systems of care. Key contexts including the co-creation of care plans, interagency working and collaborative funding systems. Mechanisms include children and families feeling reassured that care will be responsive to their evolving needs. Positive and negative outcomes were also evident: increased referrals to appropriate services, improved care experiences and a distrust of school services to meet the needs of children and families.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>This is the first realist review of multisector integrated care that considers the perspectives of health, education and social care. Policymakers should prioritise child-centred policies and cross-sector funding systems to support shared goals, information-sharing and planning care that incorporates families\u2019 views and needs. The development and rigorous evaluation of multisector programmes for children with life-limiting conditions requires further research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/02692163261483460","type":"journal-article","created":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T11:51:46Z","timestamp":1788868306000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Multisectoral integrated care for children and young people with life-limiting conditions: A realist review"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5752-4492","authenticated-orcid":false,"given":"Abinaya","family":"Chandrasekar","sequence":"first","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery &amp; Palliative Care, Cicely Saunders Institute, King\u2019s College London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1036-978X","authenticated-orcid":false,"given":"Pru","family":"Holder","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery &amp; Palliative Care, Cicely Saunders Institute, King\u2019s College London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8763-2363","authenticated-orcid":false,"given":"Mary","family":"Baginsky","sequence":"additional","affiliation":[{"name":"NIHR Health and Social Care Workforce Unit, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7833-1016","authenticated-orcid":false,"given":"Lucy","family":"Coombes","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery &amp; Palliative Care, Cicely Saunders Institute, King\u2019s College London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bobbie","family":"Farsides","sequence":"additional","affiliation":[{"name":"Brighton and Sussex Medical School, University of Sussex, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gabriella Lake","family":"Walker","sequence":"additional","affiliation":[{"name":"Patient and Public Representative, Hebden Bridge, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1289-3726","authenticated-orcid":false,"given":"Fliss EM","family":"Murtagh","sequence":"additional","affiliation":[{"name":"Hull York Medical School, University of Hull, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Salama","sequence":"additional","affiliation":[{"name":"Birmingham Children\u2019s Hospital, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3090-2107","authenticated-orcid":false,"given":"Diane","family":"Sellers","sequence":"additional","affiliation":[{"name":"Chailey Clinical Services, Sussex Community NHS Foundation Trust, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9653-8689","authenticated-orcid":false,"given":"Richard","family":"Harding","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery &amp; Palliative Care, Cicely Saunders Institute, King\u2019s College London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1360-4191","authenticated-orcid":false,"given":"Lorna K.","family":"Fraser","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery &amp; Palliative Care, Cicely Saunders Institute, King\u2019s College London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,9,8]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"crossref","unstructured":"Fraser LK Parslow R. Children with life-limiting conditions in paediatric intensive care units: a national cohort data linkage study. Arch Dis Child 2018; 103(6): 540\u2013547. https:\/\/doi.org\/10.1136\/archdischild-2017-312638","DOI":"10.1136\/archdischild-2017-312638"},{"key":"e_1_3_3_3_2","doi-asserted-by":"crossref","unstructured":"Frakking TT Teoh HJ Shelton D et al. Effect of care coordination using an Allied Health Liaison Officer for chronic noncomplex medical conditions in children: a multicenter randomized clinical trial. JAMA Pediatr 2022; 176(3): 244\u2013252. https:\/\/doi.org\/10.1001\/jamapediatrics.2021.5465","DOI":"10.1001\/jamapediatrics.2021.5465"},{"key":"e_1_3_3_4_2","doi-asserted-by":"crossref","unstructured":"Ye C Lehana T Lehana T. A sensitivity analysis of the children\u2019s Treatment Network trial: a randomized controlled trial of integrated services versus usual care for children with special health care needs. Clin Epidemiol 2013; 5: 373. https:\/\/doi.org\/10.2147\/clep.s48870","DOI":"10.2147\/CLEP.S48870"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1080\/02699050500110165"},{"key":"e_1_3_3_6_2","unstructured":"UK Government. Departments agencies and public bodies [online] https:\/\/www.gov.uk\/government\/organisations (2025 accessed 29 October 2025)."},{"key":"e_1_3_3_7_2","doi-asserted-by":"crossref","unstructured":"McLorie EV Hackett J Fraser LK. Understanding parents\u2019 experiences of care for children with medical complexity in England: a qualitative study. BMJ Paediatr Open 2023; 7(1): e002057. https:\/\/doi.org\/10.1136\/bmjpo-2023-002057","DOI":"10.1136\/bmjpo-2023-002057"},{"key":"e_1_3_3_8_2","doi-asserted-by":"crossref","unstructured":"Page BF Hinton L Harrop E et al. The challenges of caring for children who require complex medical care at home: \u2018The go between for everyone is the parent and as the parent that\u2019s an awful lot of responsibility\u2019. Health Expect 2020; 23(5): 1144\u20131154. https:\/\/doi.org\/10.1111\/hex.13092","DOI":"10.1111\/hex.13092"},{"key":"e_1_3_3_9_2","doi-asserted-by":"crossref","unstructured":"Hillis R Brenner M Larkin PJ et al. The role of care coordinator for children with complex care needs: a systematic review. Int J Integr Care 2016; 16(2): 12. https:\/\/doi.org\/10.5334\/ijic.2250","DOI":"10.5334\/ijic.2250"},{"key":"e_1_3_3_10_2","doi-asserted-by":"crossref","unstructured":"Berry JG Hall M Neff J et al. Children with medical complexity and Medicaid: spending and cost savings. Health Aff 2014; 33(12): 2199\u20132206. https:\/\/doi.org\/10.1377\/hlthaff.2014.0828","DOI":"10.1377\/hlthaff.2014.0828"},{"key":"e_1_3_3_11_2","doi-asserted-by":"crossref","unstructured":"Coombes L Braybrook D Roach A et al. Achieving child-centred care for children and young people with life-limiting and life-threatening conditions\u2014a qualitative interview study. Eur J Pediatr 2022; 181(10): 3739\u20133752. https:\/\/doi.org\/10.1007\/s00431-022-04566-w","DOI":"10.1007\/s00431-022-04566-w"},{"key":"e_1_3_3_12_2","doi-asserted-by":"crossref","unstructured":"Namisango E Bristowe K Allsop MJ et al. Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: a systematic review highlighting meaningful health outcomes. Patient 2019; 12(1): 15\u201355. https:\/\/doi.org\/10.1007\/s40271-018-0333-5","DOI":"10.1007\/s40271-018-0333-5"},{"key":"e_1_3_3_13_2","doi-asserted-by":"crossref","unstructured":"Joly E. Transition to adulthood for young people with medical complexity: an integrative literature review. J Pediatr Nurs 2015; 30(5): e91\u2013e103. https:\/\/doi.org\/10.1016\/j.pedn.2015.05.016","DOI":"10.1016\/j.pedn.2015.05.016"},{"key":"e_1_3_3_14_2","volume-title":"Realistic evaluation","author":"Pawson R","year":"1997","unstructured":"Pawson R, Tilley N. Realistic evaluation. Sage Publications Ltd., London,1997."},{"key":"e_1_3_3_15_2","article-title":"Realist synthesis","author":"Wong G","year":"2013","unstructured":"Wong G, Westhorp G, Pawson R, et al. Realist synthesis. RAMESES Training Materials. The RAMESES Project 55, 2013.","journal-title":"RAMESES Training Materials"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1258\/1355819054308530"},{"key":"e_1_3_3_17_2","doi-asserted-by":"crossref","unstructured":"Dalkin SM Greenhalgh J Jones D et al. What\u2019s in a mechanism? Development of a key concept in realist evaluation. Implement Sci 2015; 10: 1049. https:\/\/doi.org\/10.1186\/s13012-015-0237-x","DOI":"10.1186\/s13012-015-0237-x"},{"key":"e_1_3_3_18_2","article-title":"A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance","volume":"374","author":"Skivington K","year":"2021","unstructured":"Skivington K, Matthews L, Simpson SA, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ 2021; 374: n2061.","journal-title":"BMJ"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.3310\/hsdr02300"},{"key":"e_1_3_3_20_2","doi-asserted-by":"crossref","unstructured":"Wong G Greenhalgh T Westhorp G et al. RAMESES publication standards: realist syntheses. BMC Med 2013; 11(1): 21. https:\/\/doi.org\/10.1186\/1741-7015-11-21","DOI":"10.1186\/1741-7015-11-21"},{"key":"e_1_3_3_21_2","volume-title":"Integrated health services\u2013what and why?","author":"Waddington C","year":"2008","unstructured":"Waddington C, Egger D. Integrated health services\u2013what and why? World Health Organization, 2008."},{"key":"e_1_3_3_22_2","doi-asserted-by":"crossref","unstructured":"Holder P Coombes L Chudleigh J et al. Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence. Palliat Med 2024; 38(9): 981\u2013999. https:\/\/doi.org\/10.1177\/02692163241271010","DOI":"10.1177\/02692163241271010"},{"key":"e_1_3_3_23_2","doi-asserted-by":"crossref","unstructured":"Wolfe I Satherley RM Scotney E et al. Integrated care models and child health: a meta-analysis. Pediatrics 2020; 145(1): e20183747. https:\/\/doi.org\/10.1542\/peds.2018-3747","DOI":"10.1542\/peds.2018-3747"},{"key":"e_1_3_3_24_2","unstructured":"Veritas Health Innovation. Covidence systematic review software [online]. Veritas Health Innovation https:\/\/www.covidence.org."},{"key":"e_1_3_3_25_2","doi-asserted-by":"crossref","unstructured":"Gisev N Bell JS Chen TF. Interrater agreement and interrater reliability: key concepts approaches and applications. Res Soc Adm Pharm 2013; 9(3): 330\u2013338. https:\/\/doi.org\/10.1016\/j.sapharm.2012.04.004","DOI":"10.1016\/j.sapharm.2012.04.004"},{"key":"e_1_3_3_26_2","volume-title":"Convention on the Rights of the Child","author":"UNICEF","year":"1989","unstructured":"UNICEF. Convention on the Rights of the Child. UNICEF, 1989."},{"key":"e_1_3_3_27_2","volume-title":"Children Act","author":"Anonymous","year":"2004","unstructured":"Anonymous. Children Act. United Kingdom Government, 2004."},{"key":"e_1_3_3_28_2","unstructured":"Together for Short Lives. Difference between children\u2019s and adult palliative care [online]. Together for Short Lives https:\/\/www.togetherforshortlives.org.uk\/changing-lives\/supporting-care-professionals\/introduction-childrens-palliative-care\/ (2025)."},{"key":"e_1_3_3_29_2","doi-asserted-by":"crossref","unstructured":"Page MJ McKenzie JE Bossuyt PM et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021; 74: 790\u2013799. https:\/\/doi.org\/10.1016\/j.rec.2021.07.010","DOI":"10.1016\/j.rec.2021.07.010"},{"key":"e_1_3_3_30_2","volume-title":"NVivo Version 14","author":"Lumivero Software","year":"2023","unstructured":"Lumivero Software. NVivo Version 14. Lumivero Software, 2023."},{"key":"e_1_3_3_31_2","unstructured":"CASP [Online]. Critical Appraisal Skills Programme [online]. 2023 https:\/\/casp-uk.net\/casp-tools-checklists\/"},{"key":"e_1_3_3_32_2","doi-asserted-by":"crossref","unstructured":"Waldron C Cahill J Cromie S et al. Personal Electronic Records of Medications (PERMs) for medication reconciliation at care transitions: a rapid realist review. BMC Med Inform Decis Mak 2021; 21(1): 307. https:\/\/doi.org\/10.1186\/s12911-021-01659-8","DOI":"10.1186\/s12911-021-01659-8"},{"key":"e_1_3_3_33_2","doi-asserted-by":"crossref","unstructured":"Dada S Dalkin S Gilmore B et al. Applying and reporting relevance richness and rigour in realist evidence appraisals: advancing key concepts in realist reviews. Res Synth Methods 2023; 14(3): 504\u2013514. https:\/\/doi.org\/10.1002\/jrsm.1630","DOI":"10.1002\/jrsm.1630"},{"key":"e_1_3_3_34_2","doi-asserted-by":"crossref","unstructured":"Abbott D Watson D Townsley R. The proof of the pudding: What difference does multi-agency working make to families with disabled children with complex health care needs? Child Fam Soc Work 2005; 10: 229\u2013238. https:\/\/doi.org\/10.1111\/j.1365-2206.2005.00362.x","DOI":"10.1111\/j.1365-2206.2005.00362.x"},{"key":"e_1_3_3_35_2","volume-title":"Models of good practice in joined-up assessment: working for children with \u2018significant and complex needs\u2019","author":"Boddy J","year":"2014","unstructured":"Boddy J, Statham J. Models of good practice in joined-up assessment: working for children with \u2018significant and complex needs\u2019. Department for Education, 2014."},{"key":"e_1_3_3_36_2","doi-asserted-by":"crossref","unstructured":"Luka\u010devi\u0107 Lovren\u010di\u0107 I Banadinovi\u0107 M Mujki\u0107 A et al. Qualitative study of paediatricians\u2019 experiences in the care process for preschool children with complex needs: an example of paediatric care in Croatia. BMJ Open 2024; 14: e084887. https:\/\/doi.org\/10.1136\/bmjopen-2024-084887","DOI":"10.1136\/bmjopen-2024-084887"},{"key":"e_1_3_3_37_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2006.01554.x"},{"key":"e_1_3_3_38_2","volume-title":"Evidence reviews for combined approaches to identifying, assessing and monitoring health, social care and education needs: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence reviews for combined approaches to identifying, assessing and monitoring health, social care and education needs: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_39_2","doi-asserted-by":"crossref","unstructured":"Willems J Bablok I Farin-Glattacker E et al. Barriers and facilitating factors of care coordination for children with spinal muscular atrophy type I and II from the caregivers\u2019 perspective: an interview study. Orphanet J Rare Dis 2023; 18: 1-20. https:\/\/doi.org\/10.1186\/s13023-023-02739-w","DOI":"10.1186\/s13023-023-02739-w"},{"key":"e_1_3_3_40_2","doi-asserted-by":"crossref","unstructured":"Sadof M Carlin S Brandt S et al. A step-by-step guide to building a complex care coordination program in a small setting. Clin Pediatr 2019; 58: 897\u2013902. https:\/\/doi.org\/10.1177\/0009922819849057","DOI":"10.1177\/0009922819849057"},{"key":"e_1_3_3_41_2","doi-asserted-by":"crossref","unstructured":"Calheiros DDS Mendes EG Dounis AB et al. Planning implementation and evaluation of occupational therapists\u2019 actions in a support network for school inclusion. Cad Bras Ter Ocup 2024; 32. https:\/\/doi.org\/10.1590\/2526-8910.ctoao392838022","DOI":"10.1590\/2526-8910.ctoao392838021"},{"key":"e_1_3_3_42_2","doi-asserted-by":"crossref","unstructured":"Davies SC Lundine JP Justice AF. Care coordination for children with special health care needs: a scoping review to inform strategies for students with traumatic brain injuries. J Sch Health 2022; 92: 270\u2013281. https:\/\/doi.org\/10.1111\/josh.13132","DOI":"10.1111\/josh.13132"},{"key":"e_1_3_3_43_2","doi-asserted-by":"crossref","unstructured":"Brenner M O\u2019Shea MP Larkin P et al. Management and integration of care for children living with complex care needs at the acute\u2013community interface in Europe. Lancet Child Adolesc Health 2018; 2(11): 822\u2013831. https:\/\/doi.org\/10.1016\/s2352-4642(18)30272-4","DOI":"10.1016\/S2352-4642(18)30272-4"},{"key":"e_1_3_3_44_2","doi-asserted-by":"crossref","unstructured":"Van Speybroeck A Beierwaltes P Hopson B et al. Care coordination guidelines for the care of people with spina bifida. J Pediatr Rehabil Med 2020; 13: 499\u2013511. https:\/\/doi.org\/10.3233\/prm-200738","DOI":"10.3233\/PRM-200738"},{"key":"e_1_3_3_45_2","article-title":"A chasm: consequences of poor collaboration between health and education in paediatric cerebral palsy care in Johannesburg","volume":"68","author":"Lydall M","year":"2021","unstructured":"Lydall M, Gerber B. A chasm: consequences of poor collaboration between health and education in paediatric cerebral palsy care in Johannesburg. S Afr J Commun Disord 2021; 68: e1\u2013e8.","journal-title":"S Afr J Commun Disord"},{"key":"e_1_3_3_46_2","volume-title":"Evidence review for suitability and accessibility of environments: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review for suitability and accessibility of environments: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_47_2","doi-asserted-by":"crossref","unstructured":"Swann-Thomsen HE Tivis R Sitts C et al. Healthcare costs and utilization in medically fragile pediatric patients during the first year of care coordination. Child Health Care 2026; 55: 41\u201356. https:\/\/doi.org\/10.1080\/02739615.2024.2338750","DOI":"10.1080\/02739615.2024.2338750"},{"key":"e_1_3_3_48_2","volume-title":"Evidence review of barriers and facilitators of joined-up care: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review of barriers and facilitators of joined-up care: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_49_2","doi-asserted-by":"crossref","unstructured":"Vessey JA McCrave J Curro-Harrington C et al. Enhancing care coordination through patient- and family-initiated telephone encounters: a quality improvement project. J Pediatr Nurs 2015; 30: 915\u2013923. https:\/\/doi.org\/10.1016\/j.pedn.2015.05.012","DOI":"10.1016\/j.pedn.2015.05.012"},{"key":"e_1_3_3_50_2","doi-asserted-by":"publisher","DOI":"10.1145\/2702123.2702320"},{"key":"e_1_3_3_51_2","doi-asserted-by":"crossref","unstructured":"Garvey W O\u2019Connor M Quach J et al. Better support for children with additional health and developmental needs in school settings: perspectives of education experts. Child 2020; 46: 522\u2013529. https:\/\/doi.org\/10.1111\/cch.12766","DOI":"10.1111\/cch.12766"},{"key":"e_1_3_3_52_2","volume-title":"Evidence review for palliative and end of life care: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review for palliative and end of life care: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_53_2","volume-title":"Evidence review for involving children and young people: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review for involving children and young people: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_54_2","doi-asserted-by":"crossref","unstructured":"Moore C Adams S Beatty M et al. Caregiver and Care Team perceptions of online collaborative care planning for CMC. Pediatrics 2024; 154(3): e2024065884. https:\/\/doi.org\/10.1542\/peds.2024-065884","DOI":"10.1542\/peds.2024-065884"},{"key":"e_1_3_3_55_2","doi-asserted-by":"crossref","unstructured":"Bourke-Taylor HM Cotter C Lalor A et al. School success and participation for students with cerebral palsy: a qualitative study exploring multiple perspectives. Disabil Rehabil 2018; 40: 2163\u20132171. https:\/\/doi.org\/10.1080\/09638288.2017.1327988","DOI":"10.1080\/09638288.2017.1327988"},{"key":"e_1_3_3_56_2","volume-title":"Evidence review for supporting participation in education and social activities: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review for supporting participation in education and social activities: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_57_2","volume-title":"Evidence review for planning and managing transition from children\u2019s to adults\u2019 services: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review for planning and managing transition from children\u2019s to adults\u2019 services: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_58_2","volume-title":"Evidence review for promoting and maintaining inclusion, independence and wellbeing: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review for promoting and maintaining inclusion, independence and wellbeing: disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_59_2","volume-title":"Evidence review for supporting families and carers: Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care and Excellence","year":"2022","unstructured":"National Institute for Health and Care and Excellence. Evidence review for supporting families and carers: Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_60_2","volume-title":"Evidence review of views and experiences of service providers: Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence review of views and experiences of service providers: Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_61_2","volume-title":"NHS Special pall services","author":"Anonymous","year":"2023","unstructured":"Anonymous. NHS Special pall services. National Health Service, 2023."},{"key":"e_1_3_3_62_2","volume-title":"Integrated care and support: our shared commitment","author":"National Collaboration for Integrated Care & Support","year":"2013","unstructured":"National Collaboration for Integrated Care & Support. Integrated care and support: our shared commitment. National Collaboration for Integrated Care & Support, 2013."},{"key":"e_1_3_3_63_2","doi-asserted-by":"crossref","unstructured":"Giroux C Corkett J. Interprofessional collaboration for children with special healthcare needs: a review of effective education integration. J Sociol Soc Welf 2016; 43: 55\u201369. https:\/\/doi.org\/10.15453\/0191-5096.3997","DOI":"10.15453\/0191-5096.3997"},{"key":"e_1_3_3_64_2","doi-asserted-by":"crossref","unstructured":"Breneol S Belliveau J Cassidy C et al. Strategies to support transitions from hospital to home for children with medical complexity: a scoping review. Int J Nurs Stud 2017; 72: 91\u2013104. https:\/\/doi.org\/10.1016\/j.ijnurstu.2017.04.011","DOI":"10.1016\/j.ijnurstu.2017.04.011"},{"key":"e_1_3_3_65_2","doi-asserted-by":"crossref","unstructured":"Myers S Collins B Maguire S. Care coordination for children with a disability or developmental difficulty: empowers families and reduces the burden on staff supporting them. Child 2024; 50: e13158. https:\/\/doi.org\/10.1111\/cch.13158","DOI":"10.1111\/cch.13158"},{"key":"e_1_3_3_66_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00543.x"},{"key":"e_1_3_3_67_2","doi-asserted-by":"crossref","unstructured":"Kaslovsky R Sadof M. How to best deliver care to children with chronic illness: cystic fibrosis as a model. Curr Opin Pediatr 2010; 22: 822\u2013828. https:\/\/doi.org\/10.1097\/mop.0b013e32833faa5e","DOI":"10.1097\/MOP.0b013e32833faa5e"},{"key":"e_1_3_3_68_2","doi-asserted-by":"crossref","unstructured":"Cohen E Lacombe-Duncan A Spalding K et al. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC Health Serv Res 2012; 12: 366. https:\/\/doi.org\/10.1186\/1472-6963-12-366","DOI":"10.1186\/1472-6963-12-366"},{"key":"e_1_3_3_69_2","doi-asserted-by":"crossref","unstructured":"Cady RG Kelly AM Finkelstein SM et al. Attributes of advanced practice registered nurse care coordination for children with medical complexity. J Pediatr Health Care 2014; 28: 305\u2013312. https:\/\/doi.org\/10.1016\/j.pedhc.2013.06.005","DOI":"10.1016\/j.pedhc.2013.06.005"},{"key":"e_1_3_3_70_2","doi-asserted-by":"crossref","unstructured":"Schnell JL Kaugars AS Johaningsmeir S et al. Listening to families: qualitative analysis of family perspectives on the impact of participating in a complex care program. Child Health Care 2025; 54: 350\u2013361. https:\/\/doi.org\/10.1080\/02739615.2024.2433963","DOI":"10.1080\/02739615.2024.2433963"},{"key":"e_1_3_3_71_2","doi-asserted-by":"crossref","unstructured":"Asprey A Nash T. The importance of awareness and communication for the inclusion of young people with life-limiting and life-threatening conditions in mainstream schools and colleges. Br J Spec Educ 2006; 33: 10\u201318. https:\/\/doi.org\/10.1111\/j.1467-8578.2006.00406.x","DOI":"10.1111\/j.1467-8578.2006.00406.x"},{"key":"e_1_3_3_72_2","doi-asserted-by":"crossref","unstructured":"Adams S Beatty M Moore C et al. Perspectives on team communication challenges in caring for children with medical complexity. BMC Health Serv Res 2021; 21. https:\/\/doi.org\/10.1186\/s12913-021-06304-8","DOI":"10.1186\/s12913-021-06304-8"},{"key":"e_1_3_3_73_2","volume-title":"Evidence reviews for enabling professionals to meet the needs of children and young people: Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care","author":"National Institute for Health and Care Excellence","year":"2022","unstructured":"National Institute for Health and Care Excellence. Evidence reviews for enabling professionals to meet the needs of children and young people: Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care. National Institute for Health and Care Excellence, 2022."},{"key":"e_1_3_3_74_2","doi-asserted-by":"crossref","unstructured":"Antolick MM Looman WS Cady RG et al. Identifying and communicating postdischarge goals for hospitalized children with medical complexity: a process improvement pilot in a specialty pediatric setting. J Pediatr Health Care 2020; 34: 90\u201398. https:\/\/doi.org\/10.1016\/j.pedhc.2019.07.006","DOI":"10.1016\/j.pedhc.2019.07.006"},{"key":"e_1_3_3_75_2","volume-title":"Personalisation of social care for disabled children, young people, their families and carers Opportunities, challenges and concerns","author":"Council for Disabled Children","unstructured":"Council for Disabled Children.Personalisation of social care for disabled children, young people, their families and carers Opportunities, challenges and concerns."},{"key":"e_1_3_3_76_2","doi-asserted-by":"crossref","unstructured":"Cady R Finkelstein S Kelly A. A telehealth nursing intervention reduces hospitalizations in children with complex health conditions. J Telemed Telecare 2009; 15: 317\u2013320. https:\/\/doi.org\/10.1258\/jtt.2009.090105","DOI":"10.1258\/jtt.2009.090105"},{"key":"e_1_3_3_77_2","doi-asserted-by":"crossref","unstructured":"Brenner M Doyle A Begley T et al. Enhancing care of children with complex healthcare needs: an improvement project in a community health organisation in Ireland. BMJ Open Qual 2021; 10: e001025. https:\/\/doi.org\/10.1136\/bmjoq-2020-001025","DOI":"10.1136\/bmjoq-2020-001025"},{"key":"e_1_3_3_78_2","doi-asserted-by":"crossref","unstructured":"Hewitt-Taylor J. Children who have complex health needs: parents\u2019 experiences of their child\u2019s education. Child 2009; 35: 521\u2013526. https:\/\/doi.org\/10.1111\/j.1365-2214.2009.00965.x","DOI":"10.1111\/j.1365-2214.2009.00965.x"},{"key":"e_1_3_3_79_2","doi-asserted-by":"publisher","DOI":"10.1177\/1367493518814930"},{"key":"e_1_3_3_80_2","doi-asserted-by":"crossref","unstructured":"Robinson S Summers K. An evaluation of the educational support for teachers who teach children with life-limiting illness in schools. Pastor Care Educ 2012; 30: 191\u2013207. https:\/\/doi.org\/10.1080\/02643944.2012.671341","DOI":"10.1080\/02643944.2012.671341"},{"key":"e_1_3_3_81_2","doi-asserted-by":"crossref","unstructured":"Aruda MM Kelly M Newinsky K. Unmet needs of children with special health care needs in a specialized day school setting. J Sch Nurs 2011; 27: 209\u2013218. https:\/\/doi.org\/10.1177\/1059840510391670","DOI":"10.1177\/1059840510391670"},{"key":"e_1_3_3_82_2","doi-asserted-by":"crossref","unstructured":"Giusti A Nkhoma K Petrus R et al. The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review. BMJ Glob Health 2020; 5(12): e003330. https:\/\/doi.org\/10.1136\/bmjgh-2020-003330","DOI":"10.1136\/bmjgh-2020-003330"},{"key":"e_1_3_3_83_2","doi-asserted-by":"crossref","unstructured":"Booth A Maddison J Wright K et al. Research prioritisation exercises related to the care of children and young people with life-limiting conditions their parents and all those who care for them: a systematic scoping review. Palliat Med 2018; 32(10): 1552\u20131566. https:\/\/doi.org\/10.1177\/0269216318800172","DOI":"10.1177\/0269216318800172"},{"key":"e_1_3_3_84_2","doi-asserted-by":"crossref","unstructured":"Kuo DZ McAllister JW Rossignol L et al. Care coordination for children with medical complexity: whose care is it anyway? Pediatrics 2018; 141(Suppl 3): S224\u2013S232. https:\/\/doi.org\/10.1542\/peds.2017-1284G","DOI":"10.1542\/peds.2017-1284G"},{"key":"e_1_3_3_85_2","doi-asserted-by":"crossref","unstructured":"Cohen E Quartarone S Orkin J et al. Effectiveness of structured care coordination for children with medical complexity: the complex care for kids Ontario (CCKO) randomized clinical trial. JAMA Pediatr 2023; 177(5): 461\u2013471. https:\/\/doi.org\/10.1001\/jamapediatrics.2023.0115","DOI":"10.1001\/jamapediatrics.2023.0115"},{"key":"e_1_3_3_86_2","doi-asserted-by":"publisher","DOI":"10.5334\/ijic.2250"},{"key":"e_1_3_3_87_2","doi-asserted-by":"crossref","unstructured":"Doug M Adi Y Williams J et al. Transition to adult services for children and young people with palliative care needs: a systematic review. Arch Dis Child 2011; 96(1): 78\u201384. https:\/\/doi.org\/10.1136\/adc.2009.163931","DOI":"10.1136\/adc.2009.163931"},{"key":"e_1_3_3_88_2","doi-asserted-by":"crossref","unstructured":"Lotz JD Jox RJ Borasio GD et al. Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study. Palliat Med 2015; 29(3): 212\u2013222. https:\/\/doi.org\/10.1177\/0269216314552091","DOI":"10.1177\/0269216314552091"},{"key":"e_1_3_3_89_2","doi-asserted-by":"crossref","unstructured":"Joren CY Kars MC Kremer LCM et al. The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study. BMC Palliat Care 2024; 23(1): 236. https:\/\/doi.org\/10.1186\/s12904-024-01569-2","DOI":"10.1186\/s12904-024-01569-2"},{"key":"e_1_3_3_90_2","volume-title":"Fit for the future: 10 year health plan for England","author":"National Health Service, and Secretary of State for Health and Social Care","year":"2025","unstructured":"National Health Service, and Secretary of State for Health and Social Care. Fit for the future: 10 year health plan for England. National Health Service, 2025."},{"key":"e_1_3_3_91_2","unstructured":"Anonymous. Lambeth Special Schools\u2013The best support for the most in need [online] https:\/\/teachlambeth.com\/lambeth-special-schools\/ (2025 accessed 23 September 2025)."},{"key":"e_1_3_3_92_2","unstructured":"Anonymous. Chailey Heritage School [online] https:\/\/chf.org.uk\/our-school\/ (2025 accessed 23 September 2025)."},{"key":"e_1_3_3_93_2","unstructured":"Stephen Kinnock Minister of State for Care. Palliative Care and End of life Care [online]. 2025 https:\/\/questions-statements.parliament.uk\/written-statements\/detail\/2025-11-24\/hcws1087 (accessed 30 March 2026)."},{"key":"e_1_3_3_94_2","volume-title":"Providing high quality palliative care for our children","author":"Department of Health Northern Ireland","year":"2016","unstructured":"Department of Health Northern Ireland. Providing high quality palliative care for our children. Department of Health Northern Ireland, 2016."}],"container-title":["Palliative Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/02692163261483460","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/02692163261483460","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/02692163261483460","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T11:50:41Z","timestamp":1789127441000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/02692163261483460"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,8]]},"references-count":93,"alternative-id":["10.1177\/02692163261483460"],"URL":"https:\/\/doi.org\/10.1177\/02692163261483460","relation":{},"ISSN":["0269-2163","1477-030X"],"issn-type":[{"value":"0269-2163","type":"print"},{"value":"1477-030X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,8]]},"article-number":"02692163261483460"}}