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.

Background: This literature review aims to offer practitioners an overview of the key components involved in designing the evaluation of a paediatric hospice-at-home pilot that will assess the effectiveness, efficiency and sustainability of the programme. The literature was reviewed in two stages: the first examined existing literature in the area of paediatric palliative care. The second looked at the wider field of adult palliative care to gain further insights into evaluation tool design. The findings are presented as a conceptual model to highlight each component of the pilot development stage as identified for evaluation purposes, emphasising their role and impact on the resultant delivery of integrated care. The clarity and transparency of this model offers a comprehensive overview of the evaluation process to all involved in the pilot.

These findings are similar to those found internationally and demonstrate the commitment of a new organisation to ensure that specific employee learning requirements are met if the organisation and wider specialty of Irish children's palliative care is to continue its evolution.