Parental and former patient involvement
To maximise accessibility for non-clinical participants, guidance was provided by the study steering group parent representative throughout the prioritisation process. Advice was sought from key advocacy organisations such as Bliss to determine how best to meaningfully involve parents and ex-neonatal patients while keeping questions specific enough to be addressed in interventional trials. In addition to the well-attended focused parental webinar already described, videos of sample PICO questions were recorded by different stakeholders including a parent with experience of neonatal care. Publicity for involvement in the Delphi stages of the questionnaire was supported by a range of organisations including Maternity Voices Partnerships, local parent groups and relevant advocacy and charitable groups.