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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 Item

Number of countries %(n)

Screening and Assessment

 Policies and procedures to support preventative screening, assessment and referral for routine developmental checks

46.2(12)

 Mechanisms in place to document and communicate the results of assessments and screening to all the services who provide care to the child

46.2(12)

 Mechanisms in place to support the communication of screening and assessment to parents/guardians

38.5(10)

Access to Care

 Mechanisms in place to identify all healthcare providers caring for the child

53.8(14)

 Assistance with transport of the child to hospital appointments

30.8(8)

 Policies or procedures in place to support the provision of linguistically appropriate information to the family

41.7(12)

 Policies or procedures in place to support the provision of culturally appropriate information to the family

42.3(11)

Care Coordination

 Policies and procedures in place to support care coordination

53.8(14)

Discharge Planning Coordinator in place in paediatric departments/hospitals

42.(11)

 Consultation with parents/ guardians in the development of personalised care plans

84.6(22)

 Consultation with all healthcare professionals in the development of personalised care plans

73.1(19)

Community Based Services and Supports

 Family advocacy groups involved in making recommendations to home and community-based services

38.5(10)

 Policies in place to support paediatric palliative care and end-of-life care

65.4(11)

 Access to psychological support for parents/guardians and siblings

84.6(22)

Family-Professional Partnerships

 Family advocacy groups involved in the development of policies and procedures affecting the care of the child

46.2(12)

 Parents/guardians included in national quality improvements

30.8(8)

 Parents/guardians included in the review of patient / family information

38.5(10)

Quality Assurance

 Policies or procedures in place to support quality assurance for service providers

57.7 (15)

 Data collected on the experience of care from the perspective of the parents/guardians

30.7 (8)

 Data collected on the experience of care from the perspective of the siblings

11.5 (3)