15 parent interviews were conducted with 18 parents (three couples interviewed).

Seven clinician interviews were completed. No further or repeat interviews were required as the point of information power was reached.

78% (n=14) were mothers of infants. The remaining 22% (n=4) were fathers. Age range was 22–37 years with a median age of 33 years. 83% (n=15) of parents described themselves as white/white British. The remainder were made up of Asian, Asian American and British Caribbean participants. Interview length was 27–86 min (median 39 min). Infants were recruited from 10 FIDO sites selected to include secondary and quaternary care. Two were from Northern Ireland, one from Wales and the remaining 12 from England.

The infants’ diagnosis was bacterial meningitis in 13% (n=2), urinary tract infection (UTI) in 13% (n=2), one of which also had bacteraemia (7%), skin infection in 7% (n=1) and viral or presumed viral in 60% (n=9), including viral meningitis in 13% (n=2). IBI was present in 13% (n=2), and SBI in 33% (n=5). One child had a serious congenital condition diagnosed during their admission.

93% (n=14) were admitted, 87% (n=13) were treated with IVAB and 67% (n=10) underwent LP.

The majority of clinicians interviewed were trainees (n=6, 86%). This reflects the prevalence of non-consultants treating febrile infants in the prospective FIDO study (83%). Clinicians worked in both tertiary paediatric EDs (42%, n=3) and district general hospitals (68%, n=4). 42% were from a paediatric background (n=3) and 42% (n=3) from emergency medicine, one was dual trained and one interviewee was a general practice trainee. Age range was 28–42 years with a median age of 33 years. Five identified as white British or white Irish and two as Asian or British Asian. Interviews lasted 38–66 min (median 41 min). One clinician was based in Northern Ireland, two in Wales and four in England. The Consolidated Standards of Reporting Trials diagram of patient recruitment can be seen in figure 2.

Consolidated Standards of Reporting Trials (CONSORT) diagram of participant recruitment.

Clinicians described a hospital cultural shift towards more individualised care based on sequential assessment. Consensus on what was an acceptable level of risk would increase clinicians’ confidence in using CDAs. CDAs were believed to be a valuable resource as a communication aid, and to confirm decision not to treat with IVAB or complete invasive investigations such as LPs.

Even if it’s just if you’re using it as a tool to reassure parents if the child is well and your plan is for them to go, if you can give them an actual quantifiable number and say, ‘Actually, we’ve calculated your risk as this.’ (C003)

CDAs would not over-ride clinical judgement if a child was felt to be unwell and were felt to be of more use to junior staff.

Most parents felt well informed during their admission. While a minority expressed a desire to have all information up front, most found the initial time in ED overwhelming and expressed a preference for staggered information provision: ‘For me, that was right to have just gradually drip-fed it… it was definitely explained to me on my terms’ (P003). Repetition of the same information by different clinicians increased confidence in caregivers. Parents who had received a patient information leaflet (PIL) about investigations or discharge advice found this reassuring and expressed that they felt they absorbed the information better having had a chance to read, reflect and ask questions. ‘I remember reading about that [sepsis] and thinking ‘I can’t see that it is something else’’ (P003). Those that did not receive a PIL felt that having one would have been beneficial. ‘If that would be available, then that would be a great resource for parents to have’ (P004).

Parents who were given time to absorb information and ask questions related that this was a positive experience for them, as documented in box 1. Most reported negative experiences centred around communication. This included being dismissive of parental concerns, ‘you shouldn’t actually be here for a temperature’ (P004), not giving information when requested, ‘Unfortunately he failed to answer both my questions and he just kept saying…. If she doesn’t have this test, then she would end up with brain damage’ (P006), poor handover of information between staff and lack of clear management plans, ‘I thought she was coming back to see us but she’d actually left… I obviously then had nobody to ask the question of, ‘Where do we go from here?’’ (P011).

P003: They came in and they talked about things, then they gave me the leaflets and then they appropriately gave me the space to digest this. It wasn’t a ‘taking him off my hands and taking him into a room and I didn’t know what was going on’.

P003: So, for us, it always gave opportunity to go away, digest it, ask any questions and appropriately challenge.

P015: You’re kind of taken aback, and for me, it’s just digesting it and then having the space to just try and do that myself and then for someone else to check back in, of going ‘it’s a lot, are there any questions?’

P015: I think if there’s an opportunity to give a moment of space and then come back, I think it’s just respectful.

P011: But he kept saying, ‘Are you still following me? Do you still understand?’ But it was very much like a word vomit, telling you loads of stuff and just, well, because you don’t really have the time and then obviously they leave and you have a load of questions.

Most clinicians’ initial communication involved a broad overview of the infant’s clinical condition and differential diagnoses, with a focus on urgent investigations and treatment. This information was expanded as the clinical course progressed. They did not tend to give numerical data and felt that stratifying risk in this way would not be beneficial. Furthermore, they did not have any set numerical risk thresholds they felt they could apply to decisions to patient management, relying instead on clinical judgement and parental preferences.

Parental preferences for the communication of risks of potential management plans varied greatly. While some parents expressed a preference for being fully informed of all risks, including being given statistical data, others felt this was likely to be overwhelming and preferred a broad overview (see table 1). The complexity of delivering information appropriately is further demonstrated by the intrapersonal conflict experienced by interviewee P004 who expressed both a desire to be given statistical data: ‘Stats would always be better’, and relief at not being told all the risks. ‘I’m glad in a way they didn’t go through the risks because I think it was the right decision.’

Discussion of risk

Most parents expressed a desire to be informed of the rationale behind the clinician’s suggested management but were happy to follow the recommendations. Some would rather not make decisions in the ED, feeling that the clinician was better equipped to do so. ‘I don’t know how quickly I would’ve disagreed to it, because they felt it was necessary, and when your baby is so small, you have to trust the medical professionals around you more than your own emotions’ (P001).

This was echoed by the clinicians, who felt that the burden of decision-making should be theirs but made efforts to adjust their information provision based on perceived parental preference ‘85% of the time…. People are like, ‘Do whatever you need to do, you’re worried, I’m worried, please fix it.’ I think the other 15% of the time, maybe people want a little bit more of a conversation about it and that’s okay’ (C005).

Factors contributing to trust in clinicians included having their concerns validated, clinician confidence in the proposed management plan, ‘the doctor said if it was one of her family members she would be getting the lumbar puncture… I thought, ‘well if she is happy [for a family member to have an LP]… then there’s no reason why I shouldn’t be happy for my son to have it done’’ (P001), being given time to reflect and ask further questions, ‘We challenged them, but we got answers and they were very clear’, repetition of information by various staff, ‘Throughout the stay…it was consistent information given to me’ (P015) and referencing guidelines, ‘They hadn’t just made their own decisions about what tests were needed. [The guideline] was for them to follow, which I think was reassuring to me’ (P005).

While parents were predominantly happy with the information provided during the initial phase of management, some expressed a desire for more information at a later point in their admission, particularly regarding long-term sequelae of antibiotics. Parents valued having the opportunity to talk through the infant’s progress to date, raise questions and be informed of signs of deterioration once they were home. ‘At the point in A+E… then you are definitely happy to accept the appropriate treatment… regardless of side effects… as the admission went on, maybe someone could’ve said ‘here are the risks’, or ‘here’s what to look out for once you go home.’ That might have been helpful’ (P001). Information leaflets, good safety netting and a belief that their child would continue to improve at home were central to parents and clinicians’ confidence in discharge from hospital. Having ‘open access’ or a telephone hotline was a source of significant reassurance after discharge.

As seen in table 2, clinicians were accepting of the concept of a CDA to stratify risk, and recognised that the current overtreatment of febrile infants is not without harm. Acceptance of CDAs would be contingent on national guidelines supporting their use. They felt that CDAs would be used primarily as a communication adjunct to reassure parents and as an extra tool for more junior trainees.

Clinician views of CDAs