1. Before diagnosis
Coming to hospital
Diagnosis talk
First week in hospital
Preparing to go home
Life as an outpatient
Uncertainty increases when: Parents are not ready to hear information (e.g. leaflets given too early)
Intervention: Professionals should assess behaviours of/ask parents when parents would be ready to hear headline detailed information
Uncertainty increases when: Parents want information and there is a mismatch between how much information parents want to hear and what is given (e.g. too many leaflets are given to parents, resulting in information overload)
Intervention: Professionals should aim to match the amount of information parents want to hear and what is given (and therefore parents believe they have sufficient information)
Uncertainty arises when: Information is routinised (e.g. a generic spiel is used that does not provide sufficient detail about the child)
Intervention: Professionals should individualise information
Uncertainty arises when: Complex information is not revisited (e.g. complex aspects of the diagnosis discussion are not revisited)
Intervention: Professionals should revisit both medical and non-medical information by checking with parents which topics they would like to better understand (and refer to colleagues where expertise in a topic is available)
Figure 4: Best match for successful communication in children’s cancer care
Uncertainty arises when: Staff share too much information with child / not revealed to children (e.g. staff reveal diagnosis to child without agreeing this with parents first [who may sometimes still be in shock or denial])
Intervention: Professionals and parents should set communication goals and objectives that align with the preferences of families
Uncertainty arises when: Staff provide contradictory information
(e.g. doctor and nurse provide different views on next treatment steps or comment on areas ‘outside of their expertise’ or ‘outside of their communication roles’)
Intervention: Staff should agree communication roles and responsibilities as well as processes for filling in gaps where noticed in parents’ knowledge