Table 4.

Gaps in the existing care delivery

SUBCATEGORY		DESCRIPTION
Sensitisation/public awareness		Requirement of transparent information and knowledge about palliative care for children and adolescents
Specialist paediatric nursing		Lack of specialist paediatric nurses and the availability of qualified nursing services
Pain therapy/qualified medical care		Deficit of physicians qualified in specialist paediatric pain therapy and paediatric palliative medicine
Psychosocial support		High importance of psychosocial support in order to meet the complexity of care, emotional needs/isolation, cope with the families' financial emergency, offer practical/organisational support and give attention to siblings
Networking		Different levels of networking: case-independent networking, coordination/case-management, clarification of roles and interfaces, professional exchange/helpers conference
Well-organised care at home		Management of the interface between inpatient and outpatient care, anticipatory care planning, safety for the parents, challenges in contact with parents
Infrastructure		Local proximity of care, (more) specialist teams, permanent key contact person, continuing home care by inpatient service in charge, continuing care for young adults, respite care facilities