The BUDS project
Parents are commonly provided with written information, traditionally designed by clinical staff, on admission of infants to a neonatal unit. Parent satisfaction with communication of information in neonatal care needs improvement (latest 2014 UK national survey). The BUDS project, co-led by a parent representative and co-designed with parents, had four stages in the development of a neonatal admission information booklet. Parents with experience of UK neonatal care were recruited by the BUDS’ parent representative and Bliss national neonatal charity through networking and social media, including: BUDS Facebook/twitter page, Bliss Facebook page, NeoEpoch research website, babylivinglab webcast.
Exploration: Parents and neonatal staff discussed their experience of information sharing in neonatal care and their information needs.
Co-design: Parent feedback from the exploration stage was used to re-design the existing information provided to parents (booklet A) on admission of infants to the C&W FT neonatal unit, to create booklet B.
Evaluation: QI methodology (PDSA cycles) was used to improve the information based on parent feedback and develop booklet C.
Re-evaluation: Parent satisfaction with information booklets A, B, and C was assessed using a 7-question Likert scale and open, free-text questions. Parents identified 7 information themes as important: clinical updates; unit “housekeeping”; equipment; infant location; parent support, parent involvement and empowerment, infant transfer. Overall, parent satisfaction with “clinician-designed” booklet A was significantly different to satisfaction with “parent-designed” booklet C, 29% vs 82%. Parents reported booklet C felt “like another parent explaining everything to them, rather than staff just saying things to them”.
Contribution of CLAHRC North West London
The BUDS project was initiated, funded and supported by CLAHRC NWL. We guided the team using a systematic approach to the co-design of parent information on the CWHT neonatal unit:
- Provided a project management overview and a dedicated project manager.
- Assigned an improvement science manager who supported the team’s use of QI methodology: shared project aim/action-effect-method, process mapping, focus groups, parent online survey design, PDSA cycles in the iterative development of the parent information booklet.
- Supported team in peer-to-peer QI learning at CLAHRC NWL collaborative learning events.
- Supported the team’s stakeholder management, communication strategy and PPI engagement.
- Provided statistical support.
What happened next?
The BUDS team is in discussion with CWHT to include the “parent-designed” booklet C in the admission pack routinely given to parents of infants admitted to the neonatal unit.
The project is now funded by an NIHR doctoral research fellowship (Dr Susanna Sakonidou’s, clinical lead, PhD). Bliss continue to support the project. The next step is to co-design “baby information” with parents: written, daily infant clinical updates using routinely-recorded data from the neonatal electronic patient record. The plan is to updates parents daily via information in a paper form, which will eventually be incorporated into a mobile phone application.