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Table 2 Characteristics of included studies

From: Patient and public involvement in Paediatric Intensive Care research: considerations, challenges and facilitating factors

Study Method & No. participants Lay involvement & no. participants Identification of participants Outcomes
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.