Services and Boundary Negotiations for Children with Complex Care Needs in Europe

Maria Brenner; Miriam O’Shea; Anne Clancy; Stine Lundstroem Kamionka; Philip Larkin; Sapfo Lignou; Daniela Luzi; Elena Montañana Olaso; Manna Alma; Fabrizio Pecoraro; Rose Satherley; Oscar Tamburis; Keishia Taylor; Austin Warters; Ingrid Wolfe; Jay Berry; Colman Noctor; Carol Hilliard

doi:10.1108/978-1-78973-351-820191014

Services and Boundary Negotiations for Children with Complex Care Needs in Europe

Maria Brenner, Miriam O’Shea, Anne Clancy, Stine Lundstroem Kamionka, Philip Larkin, Sapfo Lignou, Daniela Luzi, Elena Montañana Olaso, Manna Alma, Fabrizio Pecoraro, Rose Satherley, Oscar Tamburis, Keishia Taylor, Austin Warters, Ingrid Wolfe, Jay Berry, Colman Noctor, Carol Hilliard

Research output: Chapter in Book/Report/Conference proceeding › Chapter › peer-review

1 Citation (Scopus)

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.

Original language	English
Title of host publication	Issues and Opportunities in Primary Health Care for Children in Europe
Subtitle of host publication	The Final Summarised Results of the Models of Child Health Appraised (MOCHA) Project
Publisher	Emerald Group Publishing Ltd.
Pages	199-218
Number of pages	20
ISBN (Electronic)	9781789733518
ISBN (Print)	9781789733549
DOIs	https://doi.org/10.1108/978-1-78973-351-820191014
Publication status	Published - 1 Jan 2019

Keywords

access to care
Acute-community interface
child
complex care needs
complex mental health care needs
integrated care

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1108/978-1-78973-351-820191014

Cite this

Brenner, M., O’Shea, M., Clancy, A., Kamionka, S. L., Larkin, P., Lignou, S., Luzi, D., Olaso, E. M., Alma, M., Pecoraro, F., Satherley, R., Tamburis, O., Taylor, K., Warters, A., Wolfe, I., Berry, J., Noctor, C., & Hilliard, C. (2019). Services and Boundary Negotiations for Children with Complex Care Needs in Europe. In Issues and Opportunities in Primary Health Care for Children in Europe: The Final Summarised Results of the Models of Child Health Appraised (MOCHA) Project (pp. 199-218). Emerald Group Publishing Ltd.. https://doi.org/10.1108/978-1-78973-351-820191014

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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.",

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Brenner, M, O’Shea, M, Clancy, A, Kamionka, SL, Larkin, P, Lignou, S, Luzi, D, Olaso, EM, Alma, M, Pecoraro, F, Satherley, R, Tamburis, O, Taylor, K, Warters, A, Wolfe, I, Berry, J, Noctor, C & Hilliard, C 2019, Services and Boundary Negotiations for Children with Complex Care Needs in Europe. in Issues and Opportunities in Primary Health Care for Children in Europe: The Final Summarised Results of the Models of Child Health Appraised (MOCHA) Project. Emerald Group Publishing Ltd., pp. 199-218. https://doi.org/10.1108/978-1-78973-351-820191014

Services and Boundary Negotiations for Children with Complex Care Needs in Europe. / Brenner, Maria; O’Shea, Miriam; Clancy, Anne et al.
Issues and Opportunities in Primary Health Care for Children in Europe: The Final Summarised Results of the Models of Child Health Appraised (MOCHA) Project. Emerald Group Publishing Ltd., 2019. p. 199-218.

Research output: Chapter in Book/Report/Conference proceeding › Chapter › peer-review

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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

PY - 2019/1/1

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N2 - 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.

AB - 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.

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KW - complex mental health care needs

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Brenner M, O’Shea M, Clancy A, Kamionka SL, Larkin P, Lignou S et al. Services and Boundary Negotiations for Children with Complex Care Needs in Europe. In Issues and Opportunities in Primary Health Care for Children in Europe: The Final Summarised Results of the Models of Child Health Appraised (MOCHA) Project. Emerald Group Publishing Ltd. 2019. p. 199-218 doi: 10.1108/978-1-78973-351-820191014

Services and Boundary Negotiations for Children with Complex Care Needs in Europe

Abstract

Keywords

UN SDGs

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