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) |
Figures in brackets indicate the number of papers reporting that the experience matters to parents