Document is current

Article History

Received: 3 March 2025

Revised: 26 July 2025

Accepted: 31 July 2025

First Online: 17 September 2025

Competing interests

: There are no conflicts of interest.

: The survey and the focus group were advertised through Bliss (UK Neonatal Charity). Parents chose to complete the survey and chose to join the focus group. All parents who completed the survey checked a mandatory box to confirm that they understood that data provided from them would be held in accordance with data protection regulation and personal identifiable information would not be shared with any third party organisation for marketing purposes. Parents who joined the focus group completed an additional consent form. This involved agreeing to take active part in the focus group, to agree or not to quotes from the focus group being used in publications/presentations etc, to be able to withdraw from the focus group at any point, and for Dr Harrison or Dr Fraser to refer them to a relevant professional if they had concerns from any behaviour during the focus group. They additionally had to confirm their awareness that Bliss has support services available should they wish to access it, and that data would be stored in accordance to data protection regulation and not passed to third parties.