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Table 2 Structures and processes to support children assisted with LTV

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

Domain and ItemNumber of countries %(n)
Screening and Assessment
 Policies and procedures to support preventative screening, assessment and referral for routine developmental checks46.2(12)
 Mechanisms in place to document and communicate the results of assessments and screening to all the services who provide care to the child46.2(12)
 Mechanisms in place to support the communication of screening and assessment to parents/guardians38.5(10)
Access to Care
 Mechanisms in place to identify all healthcare providers caring for the child53.8(14)
 Assistance with transport of the child to hospital appointments30.8(8)
 Policies or procedures in place to support the provision of linguistically appropriate information to the family41.7(12)
 Policies or procedures in place to support the provision of culturally appropriate information to the family42.3(11)
Care Coordination
 Policies and procedures in place to support care coordination53.8(14)
Discharge Planning Coordinator in place in paediatric departments/hospitals42.(11)
 Consultation with parents/ guardians in the development of personalised care plans84.6(22)
 Consultation with all healthcare professionals in the development of personalised care plans73.1(19)
Community Based Services and Supports
 Family advocacy groups involved in making recommendations to home and community-based services38.5(10)
 Policies in place to support paediatric palliative care and end-of-life care65.4(11)
 Access to psychological support for parents/guardians and siblings84.6(22)
Family-Professional Partnerships
 Family advocacy groups involved in the development of policies and procedures affecting the care of the child46.2(12)
 Parents/guardians included in national quality improvements30.8(8)
 Parents/guardians included in the review of patient / family information38.5(10)
Quality Assurance
 Policies or procedures in place to support quality assurance for service providers57.7 (15)
 Data collected on the experience of care from the perspective of the parents/guardians30.7 (8)
 Data collected on the experience of care from the perspective of the siblings11.5 (3)