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Article History

Received: 13 July 2023

Accepted: 15 September 2023

First Online: 6 October 2023

Declarations

:

: This study complies with the 1975 Declaration of Helsinki. This was a charity-led study comprising an online, self-referred anonymous questionnaire, NHS ethical approval was therefore not required, as confirmed by NHS REC online tools (ExternalRef removed). However, good ethical practice was followed at every stage. Each family was asked to give consent to take part at the time of completion, and could not enter the questionnaire without doing so. All participants were asked to not add any identifiable information in the open text comments. Due to the personalised and highly sensitive nature of this survey, all quotes reported here are completely anonymous, kept to a minimum, any possible identifiable information has been deleted or altered and participant responses are not numbered, to ensure that all data are completely unidentifiable.

: Not applicable as no identifyable data is presented.

: PL is currently receiving a personal fellowship award from the National Institute of Health Research (NIHR) fellowship for Health Education England (HEE) / Integrated Clinical Academic (ICA) for non-medical heath care professionals (ACAF reference number 302864) and has received some support from the NIHR Biomedical Research Centre at GOSH. The views expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health.