Better Use of Data to Improve Parent Satisfaction (BUDS) v1.2/16052018
Research type
Research Study
Full title
Better Use of Data to Improve Parent Satisfaction (BUDS): a mixed method project using qualitative and improvement science methodology to improve parent experience of neonatal care.
IRAS ID
232205
Contact name
Susanna Sakonidou
Contact email
Sponsor organisation
Imperial College London
Clinicaltrials.gov Identifier
CRD42017072388, Prospero registration of systematic review protocol; IP006, NIHR CLAHRC funding reference; A1653, Rosetrees Trust grant; B1262FI0114917, Imperial College Insurance policy reference
Duration of Study in the UK
1 years, 2 months, 29 days
Research summary
Research Summary:
One in eight babies in the UK are admitted for neonatal care; this is stressful for parents, who rely on staff for verbal updates and often feel they aren’t involved in their baby’s care. All UK neonatal units use an electronic patient record system (EPR) where doctors and nurses routinely record daily information (e.g. ‘baby’s weight’, ‘milk taken’). This information enters the National Neonatal Research Database (NNRD), is sometimes incomplete, and is currently not shared with parents.
This project will investigate how the use of routine data can improve: (i) Parent satisfaction in receiving infant information, (ii) NNRD data completeness. Specifically, I will design a plain English summary sheet (using selected EPR information) for regular sharing with parents.
I have worked with parents of babies previously needing neonatal care in groups to understand their experiences, identify information they would have liked to receive daily and compare this to available data. Information parents highlight as important will be extracted from the EPR, ‘translated’ into plain language and made into written 24-hour “individual baby summaries”.
I will interview 6 parents currently on the Chelsea and Westminster unit to adjust an existing parent satisfaction questionnaire for use in this project. Then I will test the “individual baby summaries” with all parents on the unit over 2 months. I will give parents updated printed infant summaries every weekday and collect completed questionnaires weekly. I will also ask staff to complete a form about their interaction with parents and check if information entered into the NNRD is more complete. I will use this to continually improve the summaries. Finally, I will interview parents and staff before and after testing to further explore the impact of the “individual baby summaries”.
This project is funded by 3 grants: NIHR fellowship, NIHR CLAHRC NWL, Rosetrees trust.Summary of Results:
This study was led by Dr Susanna Sakonidou for her Imperial College London (ICL) PhD, sponsored by ICL and funded by the National Institute for Health Research (NIHR), the NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) NorthWest London, the Rosetrees Trust and the CWPLUS Chelsea and Westminster Hospital charity.One in eight babies in the UK are admitted for neonatal care; this is stressful for parents, who rely on staff for verbal updates and often feel they aren’t involved in their baby’s care. In the latest 2014 England survey of Parents’ experience of neonatal care, parent satisfaction ‘with receiving clinical information’ was among the lowest scoring of all areas evaluated. All UK neonatal units use an electronic patient record system (EPR) where doctors and nurses routinely record daily information (e.g. ‘baby’s weight’, ‘milk taken’). This information enters the National Neonatal Research Database (NNRD), is sometimes incomplete, and is currently not shared with parents.
This study explored the impact of sharing this information with parents of babies receiving neonatal care in the Chelsea and Westminster Hospital Neonatal Unit (CW NNU) in London, UK. To share this information with parents, a communication tool was developed by parents with previous neonatal care experience, parents of babies currently receiving neonatal care, neonatal doctors and neonatal nurses, as part of evaluating clinical services with parents. The communication tool, ‘My Baby’s Summary Report’(MBSR), is a written individualised 24-hour summary of each baby’s neonatal care information extracted from the EPR and ‘translated’ into plain language for parents.
To create the MBSR, 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 EPR. 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).
Once the MBSR was created, we interviewed 6 parents of babies receiving care on the CW NNU to adjust an existing parent satisfaction questionnaire (previously only used around or after the time of discharge from neonatal care) for use in this project care and created the PEC (Parents’ Experiences of Communication in Neonatal Care’) questionnaire. The PEC can be used by parents while babies are still receiving care on a NNU.
We trialled the process of using the MBSR with 3 parents on the CW NNU for 2 weeks and then formally tested it with 24 CW NNU parents over 6 weeks. Parents that participated in the trial received the MBSR 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 MBSR’s 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 (169 surveys completed in the baseline period and 70 surveys during the MBSR trial). We also checked daily how complete and how accurate the information being entered into the EPR by neonatal staff members was (the information which eventually formed the MBSR). Finally, we interviewed parents and staff members before and after the MBSR testing period to further explore parent/staff information exchange and the MBSR’s impact.
For analysis purposes, we asked 43 parents to complete the PEC questionnaire over a 6-week period before the MBSR trial began as part of clinical service evaluation, to get baseline parental feedback. Six parents were also recruited for interviews before the MBSR trial began as a baseline.
Results show that receiving the MBSR 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 MBSR. Parents were also more likely to recommend the CW neonatal unit to friends and family. An unexpected result was that while receiving the MBSR, parents asked their nurse for an update more frequently, and telephoned the unit more often. Similarly, neonatal staff members reported that following the MBSR 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 MBSR appeared to empower parents, serving as a reference to ask questions during the ward round, with parents overall feeling very happy with receiving the MBSR and reporting feeling more informed. Key MBSR 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 MBSR 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 MBSR and reported that parents appeared to value the MBSR, 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 MBSR’s content, although this was not mentioned during interviews. Since the MBSR is being proposed as a tool to help improve parent communication, it is anticipated that the MBSR can help better focus the verbal discussions, rather than replace or reduce them.
Finally, during the MBSR period, data were more fully completed in the neonatal database 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 MBSR (perhaps another potential reason for increased frequency of conversations between parents and staff).
In considering the MBSR 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 CW NNU is currently in progress. A live app would have the potential to be applied to any NNU, as long as electronic patient record data can be appropriately extracted for use by the app.
Further information about the study can be found at https://gbr01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.neoepoch.com%2F&data=05%7C01%7Csouthbirmingham.rec%40hra.nhs.uk%7C1e336ae4485c4579082b08dbb85a1b75%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638306469366233183%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=P1pmlgoFO6iVdjEvVMedwssCm71X%2BnhwJG4p51HOoAM%3D&reserved=0
REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
18/WM/0175
Date of REC Opinion
21 Jun 2018
REC opinion
Favourable Opinion