Table 4 Elements of hospital health service delivery and care that matter to children and young people with a life-threatening or life-shortening condition: a conceptual framework

STAFF ATTRIBUTES: Empathetic qualities

 • Staff are kind (n = 10)

 • Staff are encouraging (n = 2)

STAFF ATTRIBUTES: Professionalism

 • Staff are knowledgeable and skilled in managing the CYP's condition (n = 15)

 • Staff are thorough and careful (n = 7)

 • Staff are calm (n = 3) (PO)

STAFF ACTIONS: Sharing medical information and decision making

 • Staff offer the CYP a choice as to how much information they are given about their health, treatment & care (n = 8)

 • Staff explain medical information using words that the CYP understands (n = 8)

 • Staff offer the CYP a choice about involvement in discussions about decisions which may affect their health (n = 5)

 • Staff provide medical information in a caring way (n = 3)

 • Staff pace the provision of medical information to meet the CYP’s needs (n = 2)

STAFF ACTIONS: Delivering clinical and personal care

 • Staff minimise the CYP’s pain and discomfort (n = 12)

 • Staff notice and respond to the CYP's requests for help (n = 9)

 • Staff explain what is going to happen to the CYP (n = 9)

 • Staff consult the CYP about how they want clinical procedures and care tasks to be carried out (n = 7)

 • Staff ensure treatments and medications are provided to the CYP on time (n = 3)

 • Staff notice and respond to the CYP’s non-verbal signals that they need attention (n = 3) (PO)

 • Staff make sure the CYP is clean (n = 3) (PO)

 • Staff are prepared for the CYP's admission to or attendance on the unit/ward (n = 2) (CYPO)

 • Staff look after or help with the CYP’s appearance (n = 2) (PO)

STAFF ACTIONS: Meeting emotional and social needs

 • Staff take time to get to know the CYP (e.g. their interests, life outside hospital etc.) (n = 25)

 • Staff take the CYP’s whole life into account when arranging medical treatment and care (n = 3)

 • Staff help the CYP to access toys, games, and other sources of entertainment (n = 2)

 • Staff do all they can to ensure the CYP is calm and free from anxiety (n = 1) (PO)

 • Staff ensure that the CYPs has time alone when they want it (n = 1) (CYPO) (Inpatient only)

ORGANISATIONAL FEATURES: Resources for socialising and play

 • There is a supply of games, toys and other sources of entertainment suitable for the CYP (n = 3) (CYPO)

 • There is access to technology so that the CYP can stay in contact with friends outside hospital (n = 1) (Inpatient only)

ORGANISATIONAL FEATURES: Physical and sensory environment during inpatient stays

 • The layout of the ward allows the CYP to spend time with other CYP (n = 3) (CYPO)

 • There are facilities so that parents can stay overnight (n = 3)

 • The room/ward is not too noisy (n = 2)

 • The room/ward is a comfortable temperature (n = 1)(CYPO)

 • The beds are comfortable (n = 1) (CYPO)

 • Ward facilities are accessible if using medical equipment or a wheelchair (n = 1)

 • There are single rooms available for the CYP (n = 1) (PO)

 • There is sufficient storage for the CYP’s property (n = 1) (CYPO)

 • The food is appetising (n = 1)

ORGANISATIONAL FEATURES: Continuity of care

 • Staff are familiar to the CYP (n = 12)