It was a snap decision: Parental and professional perspectives on the speed of decisions about participation in perinatal randomised controlled trials

被引:45
作者
Snowdon, C [1 ]
Elbourne, D [1 ]
Garcia, J [1 ]
机构
[1] London Sch Hyg & Trop Med, London WC1, England
基金
英国经济与社会研究理事会;
关键词
random controlled trials; decision-making; perinatal trials; parents; United Kingdom;
D O I
10.1016/j.socscimed.2005.10.008
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
For some perinatal trials, parents can be asked to make important decisions about trial participation within limited timeframes in highly stressful circumstances. This qualitative study explores the pace of decision-making for 78 parents associated with one or more of four such trials in the UK. The themes associated with rapid decisions were concern for their baby, reactions to staff, and perceptions of the benefits and risks associated with the trial. Those who took longer to decide whether or not to participate often described similar emotions to those who made rapid decisions, but their slower decisions were because more time was available, they wanted further discussion or they found the decision particularly difficult. The majority of those who made rapid decisions felt that there were no risks associated with the trial in question, in contrast to the majority of those who made slower decisions who felt there were risks. The parents did not appear to view rapid decisions as problematic. Although there was evidence of parental vulnerability in each trial context, they largely felt that they acted swiftly and responsibly in the best interests of their child in accordance with the timeframes that were set for them. (c) 2005 Elsevier Ltd. All rights reserved.
引用
收藏
页码:2279 / 2290
页数:12
相关论文
共 38 条
[1]   Patients' experiences of intervention trials on the treatment of myocardial infarction:: is it time to adjust the informed consent procedure to the patient's capacity? [J].
Ågard, Å ;
Hermerén, G ;
Herlitz, J .
HEART, 2001, 86 (06) :632-637
[2]   Pumactant and poractant alfa for treatment of respiratory distress syndrome in neonates born at 25-29 weeks' gestation: a randomised trial [J].
Ainsworth, SB ;
Beresford, MW ;
Milligan, DWA ;
Shaw, NJ ;
Matthews, JNS ;
Fenton, AC ;
Platt, MPW .
LANCET, 2000, 355 (9213) :1387-1392
[3]  
[Anonymous], SEEK PAT CONS ETH CO
[4]  
[Anonymous], DEMYSTIFYING QUALITA
[5]   THE THERAPEUTIC MISCONCEPTION - INFORMED CONSENT IN PSYCHIATRIC RESEARCH [J].
APPELBAUM, PS ;
ROTH, LH ;
LIDZ, C .
INTERNATIONAL JOURNAL OF LAW AND PSYCHIATRY, 1982, 5 (3-4) :319-329
[6]   Neonatal research and the validity of informed consent obtained in the perinatal period [J].
Ballard H.O. ;
Shook L.A. ;
Desai N.S. ;
Anand K.J.S. .
Journal of Perinatology, 2004, 24 (7) :409-415
[7]  
BROCKLEHURST P, 1999, VPROTOCOL TRIAL EFFE
[8]  
Burgess E, 2003, ARCH DIS CHILD-FETAL, V88, P280
[9]   A review of randomised controlled trials published in Archives of Disease in Childhood from 1982-96 [J].
Campbell, H ;
Surry, SAM ;
Royle, EM .
ARCHIVES OF DISEASE IN CHILDHOOD, 1998, 79 (02) :192-197
[10]   Testing a drug during labour: the experiences of women who participated in a clinical trial [J].
Ferguson, PR .
JOURNAL OF REPRODUCTIVE AND INFANT PSYCHOLOGY, 2000, 18 (02) :117-131