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Table 3 Characteristics of included studies – third-party consent

From: Key stakeholder perceptions about consent to participate in acute illness research: a rapid, systematic review to inform epi/pandemic research preparedness

Reference Country Clinical context Study design Study aim Scenario: real or hypothetical Study sample
Respondents Direct experience of clinical context or condition Direct experience of consent model
Potential research participants
Qualitative or mixed methods studies
13. Ali 2006 UK Stroke Mixed methods Inform clinical trial design. Proposed trial evaluates the effect of routine oxygen supplementation after acute stroke 49 stroke patients, 24 carers Yes No
14. Blixen 2005a USA Stroke Qualitative (interview) Evaluate preferences or values Hypothetical study – emergency stroke research 12 stroke patients Yes No
15. Koops 2002 UK Stroke Mixed methods Inform study design. Proposed study evaluates thrombolysis for acute ischaemic stroke 54 stroke patients and carers Yes No
Survey studies
16. Barrett 2012 Canada ICU Survey (interview) Evaluate attitude or opinion Hypothetical scenarios of ICU research 136 surrogate decision makers of critically ill patients (adults and children) Yes No
17. Biros 2009a USA Status seizure – Survey (self-administered) Part of a public consultation prior to trial initiation. Proposed trial evaluates pre-hospital intervention for status seizures 1901 community members No Some
18. Chenaud 2009a Switzerland ICU Survey (Self-administered) Evaluate preferences Hypothetical scenarios of ICU research 67 patients; 52 relatives from recent ICU admission Yes No
19. Clark 2013 UK Neurosurgery Survey (Self-administered) Part of a public consultation prior to trial initiation. Proposed study evaluates surgical techniques 171 patients and carers in neuro-surgical clinic No No
20. Gigon 2013 Switzerland ICU Survey (self-administered) Evaluate choice Hypothetical scenarios of ICU research 185 patients, 125 relatives following ICU discharge Yes No
21. Kamarainen 2012c Finland Cardiac arrest Survey (Self-administered) Post-trial evaluation. Trial evaluated pre-hospital intervention for cardiac arrest 11 patient; 17 consent providers; 13 physicians (trial participants) Yes Yes
22. Perner 2010 Denmark ICU Survey (self-administered) Assess attitudes Hypothetical trials and new medications 42 next-of-kin of unconscious ICU patients Yes No
23. Scales 2009a Canada Critical illness Survey (interview) Survey preferences Hypothetical study scenarios of research during critical illness 240 survivors of critical illness Yes No
24. Schats 2003a Netherlands Stroke Survey (interview) Post-trial evaluation. Two trials that evaluated interventions for subarachnoid haemorrhage 49 patients; 47 relatives (trial participants) Yes Yes
25. Stephenson 2007 Australia Emergency care Survey (self-administered) Attitudes survey Hypothetical scenarios of critical care research 185 patients Possible No
Clinical, research staff or regulators
Survey studies
26. Burns 2013 Canada Pandemic research Survey (self-administered) Evaluate experiences, beliefs and practices Hypothetical -pandemic research 168 administrative and clinical staff involved in H1N1 pandemic research Yes Yes
27. Cook 2008c Canada, Australia, New Zealand Critical illness Survey (self-administered) Evaluate experience, beliefs, and practices Hypothetical – enrolment of critically ill children and adults 284 clinicians caring for critically ill patients Yes Yes
28. Duffett 2011a Canada Critical care research Survey (self-administered) Evaluate attitudes and beliefs Hypothetical scenario of double-blind, placebo-controlled, RCT evaluating single dose of medication perceived by REB as minimal risk 98 ICU researchers; 52 members of hospital research ethics boards. Yes Possible
29. Kompanje 2005a Netherlands Traumatic brain injury Survey (self-administered) Evaluate opinions Hypothetical -clinical emergency care 79 neuro-trauma clinical staff across 19 European countries Yes Possible
  1. acompares different consent models
  2. bcompares different stakeholder groups
  3. cpaediatrics