Table 2

Measurement overview of study phase 2

MeasurementsPhase 4
Content of ICP: to what extent does the ICP cover the reality of the situation from the perspective of the people involvedxx
Procedures and goals: what is it like to create and maintain an ICP, reason and purpose regarding the ICP, shared process with child/parents, facilitators/barriersxx
Position, contribution of child/parents and its translation in the ICP: how it was established, recognisability of own contribution/perspective, future-oriented, was the development supportive or burdening, what does it mean for the parent-professional relationshipxx
Role of the ICP in shared decision making and/or family-centred care.Xx
Study-specific questionnaire on background variables, content, process and lay-out of ICPxx
PREM Child Carex
  • CPOS, Children’s Palliative Outcome Scale; HCPs, healthcare professionals; ICP, individual care plan; MIDI, Measurement Instrument for Determinants of Innovations; PREM, patient-reported experience measures.