RESULTS

To share information with parents about their babies, we developed a communication tool with parents with previous neonatal care experience, parents of babies currently receiving neonatal care, neonatal doctors and neonatal nurses. The communication tool, ‘My Baby’s Summary Report’, is a written individualised 24-hour summary of each baby’s neonatal care information extracted from the Electronic Patient Record and ‘translated’ into non-medical language for parents. To create the ‘My Baby’s Summary Report’, we worked with parents of babies previously needing neonatal care from throughout the UK in groups (six parents face to face and 50 parents online) to understand their experiences, identify the information they would have liked to receive daily and compare this to available data in the Electronic Patient Record. We also obtained very helpful feedback from parents from across the UK via social media and the neonatal charity Bliss facebook page (reached 23,989 people on the Bliss Facebook page in the first week, generating 981 ‘post clicks’ and 399 reactions, comments and shares).

With the help of six parents, we also re-designed an existing parent satisfaction questionnaire (that originally collected feedback retrospectively) into a questionnaire fit for feedback whilst babies are still receiving neonatal care, the PEC questionnaire (Parents’ Experiences of Communication in Neonatal Care’). We presented this work at the 2021 Neonatal Society Conference in London and it has been peer-reviewed and published in the Archives of Disease in Childhood Fetal and Neonatal edition (1).

We published the study protocol in BMJ Paediatrics Open (2). We tested the process of using the ‘My Baby’s Summary Report’ with three parents on the Chelsea and Westminster Hospital neonatal unit in London for 2 weeks and then formally tested it with 24 parents on the neonatal unit over 6 weeks. Parents that participated in the trial received the ‘My Baby’s Summary Report’ every weekday during their baby’s admission and completed the PEC questionnaire at the beginning and end of their baby’s stay, as well as twice a week. In this way, we were able to continuously improve the ‘My Baby’s Summary Report’ content and format following regular parent feedback. At the same times, neonatal doctors and nurses completed a short questionnaire about their interactions with parents and their perceived workload. We also checked daily how complete and how accurate the information being entered into the Electronic Patient Record by neonatal staff members was (the information which eventually formed the ‘My Baby’s Summary Report’). Finally, we individually interviewed six parents and five staff members before and after the ‘My Baby’s Summary Report’ testing period to further explore parent/staff information exchange and the ‘My Baby’s Summary Report’  impact.

Results show that receiving the ‘My Baby’s Summary Report’ increased parent satisfaction with the ‘amount of written information received’. Throughout the testing period, parents were more satisfied with the method of communication being ‘written information’ and were highly satisfied with the ‘My Baby’s Summary Report’. Parents were also more likely to recommend the neonatal unit to friends and family. An unexpected result was that while receiving the ‘My Baby’s Summary Report’, parents asked their nurse for an update more frequently, and telephoned the unit more often. Similarly, neonatal staff members reported that following the ‘My Baby’s Summary Report’ use on the neonatal unit, they were updating parents more frequently on ward rounds (indicating that parents were attending ward rounds more frequently for staff updates).

Interviews showed that the ‘My Baby’s Summary Report’ appeared to empower parents, serving as a reference to ask questions during the ward round, with parents overall feeling very happy with receiving the ‘My Baby’s Summary Report’ and reporting feeling more informed. Key ‘My Baby’s Summary Report’ benefits highlighted by parents included being ‘actively offered’ daily updates, having more time to absorb and process information, being able to track their baby’s progress and feeling better prepared to have conversations with staff. Parents used the ‘My Baby’s Summary Report’ as a written record, reminder, memento and way of sharing their baby’s progress with their loved ones (by sending a photo of it). Staff members also discussed receiving positive feedback from parents receiving the ‘My Baby’s Summary Report’ and reported that parents appeared to value it, were more engaged, empowered to ask questions and seemingly more involved in their baby’s care.

It is likely that in response to receiving additional written information about their baby, parent expectations for having conversations with staff members were increased in general. Another explanation could include parents asking for verbal clarifications about the ‘My Baby’s Summary Report’ content, although this was not specifically mentioned during interviews. Since the ‘My Baby’s Summary Report’ is being proposed as a tool to help improve parent communication, it is anticipated that the ‘My Baby’s Summary Report’ can help better focus the verbal discussions, rather than replace or reduce them.

Finally, during the ‘My Baby’s Summary Report’ period, data were more fully completed in the neonatal Electronic Patient Record and were highly accurate (>=90%) for most items. Nurses in interviews discussed an increased motivation and accountability to record data on the Electronic Patient Record correctly, since parents would question the accuracy/completeness of information in the ‘My Baby’s Summary Report’ (perhaps another potential reason for increased frequency of conversations between parents and staff). Improving completeness and accuracy of data could further improve its usability in important neonatal research.

In considering the ‘My Baby’s Summary Report’ in future mobile application form, parents discussed wanting to have instant access to information at any time, having the option to customise the information received and allowing clinical staff to focus on providing clinical care for their baby.

Following the trial, we have developed a mobile application prototype and work for a live app for use by parents on the Chelsea and Westminster Hospital neonatal unit is currently in progress. A live app would have the potential to be applied to any neonatal unit, as long as Electronic Patient Record data can be appropriately extracted for use by the app.

REFERENCES

1.     Sakonidou S, Kotzamanis S, Tallett A, Poots AJ, Modi N, Bell D et al. Parents’ Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-time parent feedback. Archives of Disease in Childhood - Fetal and Neonatal Edition. Published Online First: 30 January 2023. doi: 10.1136/archdischild-2022-324548

2.     Sakonidou S, Andrzejewska I, Kotzamanis S, Carnegie W, Nakubulwa M, Woodcock T, et al; BUDS Project Steering Group. Better Use of Data to improve parent Satisfaction (BUDS): protocol for a prospective before-and-after pilot study employing mixed methods to improve parent experience of neonatal care. BMJ Paediatrics Open 2019;3:e000515.