The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

Abstract

Introduction:This systematic review seeks to identify the intended components of the role of care coordinator for children with complex care needs and the factors that determine its composition in practice.Theory and methods:The initial search identified 1,157 articles, of which 37 met the inclusion criteria. They were quality assessed using the SIGN hierarchy of evidence structure.Results:Core components of the role include: coordination of care needs, planning and assessment, specialist support, emotional support, administration and logistics and continuing professional development. Influencing factors on the role include the external environment (political and socio-economic), the internal environment (organisational structure and funding protocols), the skills, qualifications and experience of the coordinator, the family circumstances and the nature of the interaction between the care coordinator and the family.Discussion:The lack of consistent terminology creates challenges and there is a need for greater consensus on this issue. Organisations and healthcare professionals need to recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, there remains great variability in the understanding of the role of a care coordinator for this population.Conclusions:As the provision of care increasingly moves closer to home there is a need for greater understanding of the nature and composition of the interaction between care coordinators and families to determine the extent to which appropriate services are being provided. Further work in this area should take into consideration any potential variance in service provision, for example any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care needs and their siblings about their experiences.

Improving transitions in care for children with complex and medically fragile needs: a mixed methods study

“…Health care providers often reported turning to specific nurses when unsure about details of a certain care plan, with most all providers expressing the desire for a key coordinator assigned to each child with complex care needs and their family to facilitate effective communication. The role of this care coordinator, or otherwise referred to as a 'key worker', in the care transition process has been gaining increasing attention over the past number of years [18,41,47,48]. Most recently, the Canadian Association of Pediatric Health Centres has recommended the development of a key worker role to facilitate transition planning and management for all children with medical complexity and their families [48].…”

“…Further, the need of a care coordinator role is also mentioned in the Commonwealth Fund's 10 recommendations for optimal health care for individuals with complex care needs to reduce the risk of fragmented health care delivery and facilitate timely communication amongst the care team [41]. To support this transition, key workers act as a single point of entry, enable team collaboration and streamline essential communication amongst families and health care providers [47,48]. This key worker is a proposed strategy to mitigate the care coordination and communication challenges associated with what is often a large health team across multiple services and sectors managing the care of these children and their families.…”

Research Priorities for School Nursing in the United Arab Emirates (UAE)

“…This finding is well supported by the literature that indicates the rising incidence of children with these complex health-care needs, it also highlights the necessity to coordinate their care to ensure that they and their family are well supported, and their needs are met and sustained. School nurses can play an important role in this care coordination provision and coordination process (Brenner et al, 2015(Brenner et al, , 2016.…”

Innflytjendafjölskyldur með fötluð börn: Reynsla foreldra

“…Samþaetting getur leitt til aukins sveigjanleika og hugsanlega til fleiri og fjölbreyttari úrraeða sem gaetu SNAEFRÍÐUR ÞÓRA EGILSON | UNNUR DÍS SKAPTADÓTTIR | GUÐBJÖRG OTTÓSDÓTTIR gagnast öllum fjölskyldum með fötluð börn. Niðurstöðurnar benda jafnframt ótvíraett til mikilvaegis liðsstjóra til að halda utan um mál innflytjendafjölskyldna, vera málsvari þeirra (Bergljót Borg, 2018;Hillis, Brenner, Larkin, Cawley og Connolly, 2016) og leiða þaer í gegnum kerfin.…”