Healthcare delivery outcomes
| Healthcare delivery outcome domains | Number of studies discussing outcome domain (n=62) | Outcome | Number of studies discussing outcome (n=62) | Verbatim text extract |
| Healthcare workers—communication | 30 | Communicating in challenging settings | 10 | When they arrived at hospital…some had difficult conversations with clinical staff…NICUs commonly set boundaries around the care that they offer. 68 |
| Communicating information effectively | 7 | Other parents experienced stress from unknown medical terminology. 65 | ||
| Communication about discharge | 3 | Parents/caregivers may be inadequately prepared for home care and management of fragile neonates due to a lack of consistent and early communication. 69 | ||
| Communication with parents | 2 | ‘When you’re talking to parents while you’re doing cares and everything, you’re not really talking to them,… you’re having a vague conversation across the room.’ 70 | ||
| Developing a caring relationship | 5 | As the providers gave support to families, families also were described as supporting the staff. 55 | ||
| Keeping parents informed | 7 | ‘I asked so many questions and read all the charts every day, and I probably angered them. Squeaky wheel gets the oil, as they say.’ 50 | ||
| Treating parents with respect | 3 | ‘I got yelled at by a nurse at [the scn] for rubbing my son’s foot [even though that was okay at the nicu].’ 50 | ||
| Other outcomes only in 1 paper | Allowing time for conversation: awareness of parental views: candour: communication with ex-neonatal patients: language barrier: using aids to communication | |||
| Healthcare workers—knowledge and competence | 23 | Consistency of decisions | 6 | ‘Everybody had a different point of view but they were opinions, not facts. So that was huge, don’t even get me started on that, that was just a nightmare.’ 60 |
| Ethical decision-making | 5 | “…but when you actually mention this, say, ‘Well, in fact you know, we don’t really know what’s the best treatment,’ it is a delicate moment.” 71 | ||
| Healthcare professionals’ behaviour | 5 | ‘It wasn’t a nurse related conversation it was just a casual conversation… Like I felt a bit [sic] she wasn’t their priority.’ 60 | ||
| Healthcare professional competence | 7 | Most of the parents recalled specific incidents that they perceived as poor medical care; typically, these incidents involved technical procedures or medical knowledge. 72 | ||
| Identifying who is responsible for care | 3 | ‘Sometimes we’re not real clear who to follow up with.’ 50 | ||
| Staffing levels | 2 | It was especially helpful for the parents to see so many nurses and physicians in the NICU. 73 | ||
| Other outcomes only in 1 paper | Expertise in palliative care: medical errors: staff insecurity | |||
| Other outcomes | Iatrogenic harm | 3 | ‘There are potential toxicities, very real toxicities associated with it.’ 71 | |
| Inclusion in research | 2 | Parents were often interested in the research, and some would have liked more contact and information than they actually received. 68 | ||
NICU, neonatal intensive care unit.