Updating parents on neonatal units: “you can also log on to the app!”
Alarms going off, doctors and nurses rushing across the ward, parents desperately trying to catch someone’s eye to get an update. The reality of having a baby on neonatal intensive care is undoubtedly traumatic for parents. As high as 35% of them develop post-traumatic stress disorder , which can in turn interfere with the process of baby-parent bonding .
Having a baby that requires neonatal care is more common than one realises. One in eight babies born in the UK are admitted to a neonatal unit and surveys show that parents struggle to adjust to this unfamiliar environment. Getting verbal updates about their babies is difficult, given how busy staff is dealing with emergencies on the unit. As a result parents frequently feel excluded from their babies’ care. Little written information is provided to parents, apart from information packs on admission and discharge from the unit. Indeed, the latest 2014 NHS England Parents’ Experience of Neonatal Care survey showed parents across the UK were deeply dissatisfied with the communication of clinical information and involvement in neonatal care , with less than half of them being able to speak to a doctor as much as they wanted.
There is clearly an ongoing need to improve how we communicate with these parents. Some interventions to improve parent involvement in care have yielded good results, such as encouraging parents to hold babies skin-to-skin, Kangaroo Care, which was recently shown to improve children’s quality of life up to 20 years later . However, there is still a need to improve the provision of regular information to parents. There has been a focus on providing regular written updates to parents (via paper letters in USA  and text messages in Israel ), which could prove to be valuable adjuncts to verbal updates from staff.
The neonatal research team at Chelsea and Westminster hospital launched the BUDS project in October 2016. BUDS will develop a mobile phone app that will directly extract infant information from the neonatal electronic patient record (EPR) and deliver it to parents’ phones.
Doctors and nurses routinely record information such as weight and type of feeds on every baby, every day on EPR. This information from all UK neonatal units directly enters the National Neonatal Research Database (NNRD), which is used for national auditing and research. Delivering routinely recorded information to parents will eliminate the need to solely rely on a clinician’s availability for updates and will empower parents to obtain information about their baby themselves, by logging on to the app.
Parents will lead this project as part of the BUDS research team, steering group and neonatal charity Bliss. BUDS will interview parents who have had babies needing neonatal care in focus groups. We will explore their past experience of information sharing on neonatal units, how they would have liked to be informed and how this fits with the EPR information electronically available. The app’s content and interface will be designed with parents. The company that designed the EPR will build the app as an extension of their secure platform. We will pilot the app on the Chelsea and Westminster neonatal unit to further improve it and then roll it out to the unit for testing.
In order to test the app’s impact, we will develop and validate a suitable questionnaire for measuring parent satisfaction in collaboration with the Picker Institute, an international charity with extensive experience in developing health satisfaction surveys. Parent satisfaction with communication of clinical information and involvement in care will be measured at baseline and following implementation of the app. We will also test the completeness of data in the NNRD pre and post app usage, as we think that if staff knows that EPR information goes to parents they might record it in a better way. BUDS was awarded a NIHR CLAHRC NWL grant (Collaboration for Leadership in Applied Health Research and Care Northwest London) for quality improvement support and is also supported by the NDAU (Neonatal Data Analysis Unit) for statistical analysis. Parent recruitment has now begun via the neoepoch website.
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