Abstract
BackgroundThe number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries.MethodsThis was a non-experimental descriptive study with an embedded qualitative element. Data were collected by a Country Agent in each of the 30 countries, a local expert in child health services. Data were analysed using descriptive statistics and a thematic analysis was undertaken of the free text data provided.ResultsA total of 27 surveys were returned from a possible 30 countries (90.0%) countries. One respondent indicated that their country does not have children on long-term ventilation (LTV) in the home, therefore, responses of 26 countries (86.7%) were analysed. None of the responding countries reported that they had all of the core components in place in their country. Three themes emerged from the free text provided: ‘family preparedness for transitioning to home’, ‘coordinated pathway to specialist care’ and ‘legal and governance structures’.ConclusionsWhile the clinical care of children on LTV in the acute sector has received considerable attention, the results identify the need for an enhanced focus on the care required following discharge to the community setting. The results highlight the need for a commitment to supporting care delivery that acknowledges the complexity of contemporary child health issues and the context of the families that become their primary care givers.
Highlights
The number of children requiring long-term home ventilation has consistently increased over the last 25 years
It was reported that Italy had all of the structures and processes examined in place for four of the six domains: screening, assessment and referral; access to care; community-based services; and family-professional partnerships
The findings show that there is much to be done to enhance the care of children assisted with long-term ventilation (LTV) across the European Union (EU)/Economic Area (EEA), and indicates that health services are not yet coping with this growing number of children
Summary
The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries. Brenner et al BMC Pediatrics (2020) 20:71 these children at the community and acute care interface across 30 European Union (EU)/ European Economic Area (EEA) countries. Three specific exemplars were chosen for examination in each of the following areas: traumatic brain injury, long-term ventilation (LTV), and intractable epilepsy. This paper reports on the findings on the constituents for the effective care for children assisted with LTV in the home
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