Literature DB >> 16290917

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

Claire Snowdon1, Diana Elbourne, Jo Garcia.   

Abstract

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.

Entities:  

Mesh:

Year:  2005        PMID: 16290917     DOI: 10.1016/j.socscimed.2005.10.008

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  21 in total

Review 1.  Parental decision-making for medically complex infants and children: an integrated literature review.

Authors:  Kimberly A Allen
Journal:  Int J Nurs Stud       Date:  2014-02-20       Impact factor: 5.837

2.  Mothers of babies enrolled in a randomized trial immediately after birth report a positive experience.

Authors:  D L Harris; P J Weston; J E Harding
Journal:  J Perinatol       Date:  2014-01-30       Impact factor: 2.521

3.  Unique Ethical Concerns in Clinical Trials Comparing Psychosocial and Psychopharmalogical Interventions.

Authors:  Lisa R Stines; Norah C Feeny
Journal:  Ethics Behav       Date:  2008

4.  Parental Enrollment Decision-Making for a Neonatal Clinical Trial.

Authors:  Elliott Mark Weiss; Katherine F Guttmann; Aleksandra E Olszewski; Brooke E Magnus; Sijia Li; Scott Y H Kim; Anita R Shah; Sandra E Juul; Yvonne W Wu; Kaashif A Ahmad; Ellen Bendel-Stenzel; Natalia A Isaza; Andrea L Lampland; Amit M Mathur; Rakesh Rao; David Riley; David G Russell; Zeynep N I Salih; Carrie B Torr; Joern-Hendrik Weitkamp; Uchenna E Anani; Taeun Chang; Juanita Dudley; John Flibotte; Erin M Havrilla; Alexandra C O'Kane; Krystle Perez; Brenda J Stanley; Seema K Shah; Benjamin S Wilfond
Journal:  J Pediatr       Date:  2021-08-14       Impact factor: 4.406

5.  Maternal Perceptions of Safeguards for Research Involving Children.

Authors:  Maryam Rostami; Jane Paik Kim; Laura Turner-Essel; Laura Weiss Roberts
Journal:  J Child Fam Stud       Date:  2021-08-07

6.  Chaos, vulnerability and control: parental beliefs about neonatal clinical trials.

Authors:  F R Ward
Journal:  J Perinatol       Date:  2008-09-25       Impact factor: 2.521

Review 7.  Patient and service user engagement in research: a systematic review and synthesized framework.

Authors:  Nathan D Shippee; Juan Pablo Domecq Garces; Gabriela J Prutsky Lopez; Zhen Wang; Tarig A Elraiyah; Mohammed Nabhan; Juan P Brito; Kasey Boehmer; Rim Hasan; Belal Firwana; Patricia J Erwin; Victor M Montori; M Hassan Murad
Journal:  Health Expect       Date:  2013-06-03       Impact factor: 3.377

8.  Effect of child health status on parents' allowing children to participate in pediatric research.

Authors:  Jérémy Vanhelst; Ludovic Hardy; Dina Bert; Stéphane Duhem; Stéphanie Coopman; Christian Libersa; Dominique Deplanque; Frédéric Gottrand; Laurent Béghin
Journal:  BMC Med Ethics       Date:  2013-02-15       Impact factor: 2.652

9.  Recruiting ethnic minority participants to a clinical trial: a qualitative study.

Authors:  Virginia Macneill; Chinedu Nwokoro; Chris Griffiths; Jonathan Grigg; Clive Seale
Journal:  BMJ Open       Date:  2013-04-08       Impact factor: 2.692

10.  Qualitative research: understanding patients' needs and experiences.

Authors: 
Journal:  PLoS Med       Date:  2007-08       Impact factor: 11.069

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