TY  - CHAP
AB  - Abstract Improvements in neonatal and paediatric care mean that many children with complex care needs (CCNs) now survive into adulthood. This cohort of children places great challenges on health and social care delivery in the community: they require dynamic and responsive health and social care over a long period of time; they require organisational and delivery coordination functions; and health issues such as minor illnesses, normally presented to primary care, must be addressed in the context of the complex health issues. Their clinical presentation may challenge local care management. The project explored the interface between primary care and specialised health services and found that it is not easily navigated by children with CCNs and their families across the European Union and the European Economic Area countries. We described the referral-discharge interface, the management of a child with CCNs at the acute–community interface, social care, nursing preparedness for practice and the experiences of the child and family in all Models of Child Health Appraised countries. We investigated data integration and the presence of validated standards of care, including governance and co-creation of care. A separate enquiry was conducted into how care is accessed for children with enduring mental health disorders. This included the level of parental involvement and the presence of multidisciplinary teams in their care. For all children with CCNs, we found wide variation in access to, and governance of, care. Effective communication between the child, family and health services remains challenging, often with fragmentation of care delivery across the health and social care sector and limited service availability.
SN  - 978-1-78973-354-9, 978-1-78973-351-8/
DO  - 10.1108/978-1-78973-351-820191014
UR  - https://doi.org/10.1108/978-1-78973-351-820191014
AU  - Brenner Maria
AU  - O’Shea Miriam
AU  - Clancy Anne
AU  - Kamionka Stine Lundstroem
AU  - Larkin Philip
AU  - Lignou Sapfo
AU  - Luzi Daniela
AU  - Olaso Elena Montañana
AU  - Alma Manna
AU  - Pecoraro Fabrizio
AU  - Satherley Rose
AU  - Tamburis Oscar
AU  - Taylor Keishia
AU  - Warters Austin
AU  - Wolfe Ingrid
AU  - Berry Jay
AU  - Noctor Colman
AU  - Hilliard Carol
ED  - Mitch Blair
ED  - Michael Rigby
ED  - Denise Alexander
PY  - 2019
Y1  - 2019/01/01
TI  - Services and Boundary Negotiations for Children with Complex Care Needs in Europe
T2  - Issues and Opportunities in Primary Health Care for Children in Europe
PB  - Emerald Publishing Limited
SP  - 199
EP  - 218
Y2  - 2024/04/23
ER  -