Key constituents for integration of care for children assisted with long-term home ventilation: a European study

Title

Key constituents for integration of care for children assisted with long-term home ventilation: a European study

Creator

Brenner M; O'Shea MP; Larkin P; Berry J

Publisher

BMC Pediatrics

Date

2020

Subject

Access to care; Care coordination; Caregivers; Child; Child Health; Child Health Services; Complex care needs; Europe; Family partnership; Governance; Home Care Services; Humans; Long-term home ventilation; Palliative care; Quality of care; Respiration Artificial; Respite care; Surveys and Questionnaires

Description

BACKGROUND: 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. METHODS: This 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. RESULTS: A 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'. CONCLUSIONS: While 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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

May 2021 List

Collection

Citation

Brenner M; O'Shea MP; Larkin P; Berry J, “Key constituents for integration of care for children assisted with long-term home ventilation: a European study,” Pediatric Palliative Care Library, accessed August 2, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17528.

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