Table 6 Elements of hospital health service delivery and care that matter to parents of children with a life-threatening or life-shortening condition: a conceptual framework

STAFF ATTRIBUTES: Empathetic qualities

 • Staff are kind (n = 7)

 • Staff are patient (n = 4)

STAFF ATTRIBUTES: Professionalism

 • Staff are honest (n = 24)

 • Staff are knowledgeable and skilled in managing the CYP’s condition (n = 22)

 • Staff are committed to caring for the child (n = 10)

 • Staff are polite (n = 3)

 • Staff are calm (n = 2)

 • Staff are respectful of cultural and religious beliefs (n = 2)

STAFF ACTIONS: Sharing medical information and decision making with parents

 • Staff involve the parent to the extent that they want in decisions about treatment and care (n = 26)

 • Staff explain things in ways the parent understands (n = 23)

 • Staff give difficult or bad news sensitively (n = 22)

 • Staff give the parent all the information they want about the child’s condition, treatment and care (n = 18)

 • Staff are willing to answer questions (n = 13)

 • Staff pace the provision of medical information according to the parent’s readiness and capacity for information at the time (n = 12)

 • Staff make themselves available to talk to the parent (n = 12)

 • Staff keep the parent updated on changes in their child’s condition, treatment and care (n = 10)

 • Staff give difficult or bad news in private (n = 4)

 • Staff give the parent time to think about significant decisions (n = 4)

 • Staff check with the parent about discussing medical information in front of their child (n = 3)

 • Staff check with the parent about how much they tell their child (n = 1)

STAFF ACTIONS: Management of the child’s condition

 • Staff listen to and respect the parent’s views on their child’s condition, treatment and care (n = 24)

 • Staff give the child the same level of care and attention as other children (n = 5)

 • Staff on the ward/unit communicate with each other about the CYP’s treatment and care (n = 4)

 • Staff agree about the CYP’s treatment and care (n = 3)

 • Staff take information and advice from other specialisms into account when deciding on treatment and care (n = 3)

 • Staff take family circumstances into account when arranging treatment and care (n = 2)

 • Staff are willing to be questioned about the child’s treatment and care (n = 1)

STAFF ACTIONS: Supporting coping

 • Staff acknowledge the impact of the situation on the parent (n = 13)

 • Staff allow the parent to be hopeful (n = 11)

 • Staff take time to talk to and get to know the parent as an individual (n = 10)

 • Staff ask the parent how they are feeling (n = 6)

 • Staff prepare the parent for any changes they might see in their child (n = 6)

 • Staff give the parent information on hospital facilities (e.g. where to get food, washed) (n = 5) (Inpatient only)

 • Staff encourage the parent to take care of themselves (e.g. rest, eat etc.) (n = 4) (Inpatient only)

 • Staff comfort the parent (n = 3)

 • Staff allow the parent to be on the ward as much as is possible (n = 3) (Inpatient only)

 • Staff offer to introduce the parents to other parents on the unit/ward (n = 3) (Inpatient only)

 • Staff talk to the parent about life outside the hospital (n = 2) (Inpatient only)

STAFF ACTIONS: Supporting parenting

 •Staff support the parent to care for their child as much as they would like to (e.g. changing clothes, washing, feeding etc.) (n = 13) (Inpatient only)

 • Staff make sure the parent can be physically close to and/or hold their child (n = 7)

 • Staff support the parent to take on any medical responsibilities they want to be involved in (n = 6) (Inpatient only)

 • Staff do their best to ensure the parent has as much time with their child as they want (n = 5) (Inpatient only)

 • Staff support the parent with talking to siblings about the child’s health problems (n = 3)

 • Staff ensure the parent has opportunities for privacy with their child (n = 1) (Inpatient only)

 • Staff support the parent with explaining difficult or bad news to their child (n = 1)

 • Staff give the parent information on how the ward/unit operates (e.g. staff roles, shift patterns, visiting hours etc.)(n = 1)

ORGANISATIONAL FEATURES: Physical environment during inpatient stays

 • There are toilets on the ward for the parent (n = 2)

 • There is a room for the parent to use when they need a break (n = 2)

 • The layout of the room allows the parent to have time alone with their child (n = 2)

ORGANISATIONAL FEATURES: Continuity and coordination of care

 • Staff are familiar to the parent (n = 18)

 • There is a staff member responsible for coordinating treatment and care (n = 10)

ORGANISATIONAL FEATURES: Access to additional support

 • Psychological support services are available to the parent (n = 9)

 • Spiritual care services are available to the parent (e.g. chaplains, faith leaders etc.) (n = 4)

 • Information on welfare/benefits advice is available to the parent (n = 1)

 • Interpreters are available to the parent (n = 1)