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. |