Abstract
There is wide variation in terminology used to refer to children living with complex needs, across clinical, research and policy settings. It is important to seek to reconcile this variation to support the effective development of programmes of care for this group of children and their families. The European Academy of Pediatrics (EAP) established a multidisciplinary Working Group on Complex Care and the initial work of this group examined how complex care is defined in the literature. A scoping review was conducted which yielded 87 papers with multiple terms found that refer to children living with complex needs. We found that elements of integrated care, an essential component of care delivery to these children, were repeatedly referred to, though it was never specifically incorporated into a term to describe complex care needs. This is essential for practice and policy, to continuously assert the need for integrated care where a complex care need exists. We propose the use of the term Complex and Integrated Care Needs as a suitable term to refer to children with varying levels of complexity who require continuity of care across a variety of health and social care settings.
Highlights
A number of variations of the term complex care are used in practice, which in its broadest sense refers to children living with “multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis” [1]
The terms complex care needs and special healthcare needs most commonly referred to children with both medical and social care needs, while the term medical complexity was often referred to as a subset of children of these groups and was most commonly used to indicate a group of children with a very high level of specific medical complexities
A very small number of articles used the term complex care when referring to the needs of children living with life-limiting conditions, children living with a chronic critical illness or used the term in conjunction with less commonly used terms (n = 7)
Summary
A number of variations of the term complex care are used in practice, which in its broadest sense refers to children living with “multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis” [1]. It is important to seek to reconcile this variation and to address the absence of agreed terminology This is important: to support the effective development of programmes of care for this group of children and their families; for connectivity across health and social care systems and services; for interprofessional communication, education, and research; and for meaningful policy development. It is important that any definition agreed is not used to negatively impact on resources available for any other group of children and their families To examine this and other developing issues in the care of children with complex needs the European Academy of Pediatrics (EAP) established a multidisciplinary Working Group on Complex Care in Spring 2021. We report our key considerations and conclusions on this issue
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