Table 2 Characteristics of included studies

Tume et al. [35]

• Interviews: face to face (2) telephone (1)

• Focus group (13)

• Former PIC patient (1)

• Parents of former PIC pts (2).

• NIHR YPAG (13)

• Posters/flyers in local Hospital

• National charity

• PIC National Audit Group (PICANet)

• On line discussion forum

• Approach of NIHR YPAG

'Insight'

• Importance of national ventilator weaning study

• Outcomes to be measured

• Consent requirements

• Identification of difficulty of recruiting PPI participants

Menzies et al. [36].

Abstract only

Focus group (6)

NIHR YPAG (6)

• Approach NIHR YPAG

'Project development'

• Development of Participant Information Sheets (PIS) for a qualitative research study

• Defining research protocol

• Development of interview schedule

Menzies et al. [37].

Abstract only

Focus group (8)

Parents of children admitted to PIC (2008-2009) with Refractory Status Epilepticus (RSE) (8 parents representing 5 children)

• PIC admissions screened. Participants invited to attend focus group

'Insight'

• Views on design of relevant and acceptable trial in context of RSE as an emergency situation. Views included: decision making, deferred consent, treatment failure, equity of access to treatments

Agrawal et al. [38].

Abstract only

Telephone interviews (12)

Parents of children admitted to PIC (2006–2007) with RSE (12)

• PIC admissions screened. Participants contacted by phone

'Insight'

• Parent’s beliefs and attitudes towards clinical trials in RSE including: emergency situations and deferred consent, blinding, availability of different treatments.

• Concluded further exploration though focus group required.