Literature DB >> 19673713

Perceived challenges to obtaining informed consent for a time-sensitive emergency department study of pediatric status epilepticus: results of two focus groups.

James M Chamberlain1, Kathleen Lillis, Cheryl Vance, Kathleen M Brown, Olubunmi Fawumi, Shari Nichols, Colleen O Davis, Tasmeen Singh, Jill M Baren.   

Abstract

OBJECTIVES: The objective was to describe the perspective of research personnel on issues of informed consent in a time-sensitive clinical study under emergency circumstances.
METHODS: The authors convened concurrent focus groups of research staff and investigators involved in a pharmacokinetic study of lorazepam for status epilepticus (SE). Moderators led discussion with open-ended questions on selected issues of parental consent, communication and understanding, patient assent, and comparison to other types of studies. Focus group transcripts were analyzed to identify themes and subthemes from the discussions.
RESULTS: Most themes and subthemes were identified in both research staff and investigator focus groups. Focus group discussion points were categorized into three main themes: barriers to and enablers of informed consent, barriers to and enablers of actual enrollment, and overall ethical concerns about the research. Many of the issues identified were unique to emergency research.
CONCLUSIONS: From the perspectives of research staff and investigators enrolling patients in a time-sensitive emergency department study, the authors identified several areas of concern that should be addressed when planning future emergency studies.

Entities:  

Mesh:

Substances:

Year:  2009        PMID: 19673713      PMCID: PMC4449133          DOI: 10.1111/j.1553-2712.2009.00455.x

Source DB:  PubMed          Journal:  Acad Emerg Med        ISSN: 1069-6563            Impact factor:   3.451


  19 in total

1.  Does the emergency exception from informed consent process protect research subjects?

Authors:  Nicole M Delorio; Katie B McClure
Journal:  Acad Emerg Med       Date:  2005-11       Impact factor: 3.451

2.  Ethical and regulatory challenges associated with the exception from informed consent requirements for emergency research: from experimental design to institutional review board approval.

Authors:  Steven N Vaslef; Charles B Cairns; John M Falletta
Journal:  Arch Surg       Date:  2006-10

3.  The therapeutic misconception at 25: treatment, research, and confusion.

Authors:  Jonathan Kimmelman
Journal:  Hastings Cent Rep       Date:  2007 Nov-Dec       Impact factor: 2.683

4.  Emergency department patient literacy and the readability of patient-directed materials.

Authors:  R D Powers
Journal:  Ann Emerg Med       Date:  1988-02       Impact factor: 5.721

5.  Exception from informed consent enrollment in emergency medical research: attitudes and awareness.

Authors:  Wayne Triner; Liva Jacoby; Wayne Shelton; Mathew Burk; Samual Imarenakhue; James Watt; Gregory Larkin; Glenn McGee
Journal:  Acad Emerg Med       Date:  2007-02       Impact factor: 3.451

Review 6.  Implementing the Food and Drug Administration's final rule for waiver of informed consent in certain emergency research circumstances.

Authors:  M H Biros; S S Fish; R J Lewis
Journal:  Acad Emerg Med       Date:  1999-12       Impact factor: 3.451

Review 7.  A proposed consent process in studies that use an exception to informed consent.

Authors:  E P Sloan; K Nagy; J Barrett
Journal:  Acad Emerg Med       Date:  1999-12       Impact factor: 3.451

8.  The informed consent process and the use of the exception to informed consent in the clinical trial of diaspirin cross-linked hemoglobin (DCLHb) in severe traumatic hemorrhagic shock. DCLHb Traumatic Hemorrhagic Shock study group.

Authors:  E P Sloan; M Koenigsberg; J Houghton; D Gens; M Cipolle; J Runge; M N Mallory; G Rodman
Journal:  Acad Emerg Med       Date:  1999-12       Impact factor: 3.451

Review 9.  Confronting the ethical challenges to informed consent in emergency medicine research.

Authors:  Terri A Schmidt; David Salo; Jason A Hughes; Jean T Abbott; Joel M Geiderman; Catherine X Johnson; Katie B McClure; Mary Pat McKay; Junaid A Razzak; Raquel M Schears; Robert C Solomon
Journal:  Acad Emerg Med       Date:  2004-10       Impact factor: 3.451

10.  Implementation of community consultation for waiver of informed consent in emergency research: one Institutional Review Board's experience.

Authors:  Emily S Dix; Domenic Esposito; Frances Spinosa; Nancy Olson; Stanley Chapman
Journal:  J Investig Med       Date:  2004-03       Impact factor: 2.895

View more
  9 in total

1.  An Exploration of Useful Telemedicine-Based Resources for Clinical Research.

Authors:  Brian E Bunnell; Gina Sprague; Suparna Qanungo; Michelle Nichols; Kathryn Magruder; Steven Lauzon; Jihad S Obeid; Leslie A Lenert; Brandon M Welch
Journal:  Telemed J E Health       Date:  2019-02-20       Impact factor: 3.536

Review 2.  Ethics of research in pediatric emergency medicine.

Authors:  Gal Neuman; Itay Shavit; Doreen Matsui; Gideon Koren
Journal:  Paediatr Drugs       Date:  2015-02       Impact factor: 3.022

3.  Primary caregivers' experience with the informed consent process in the paediatric emergency department: An interview-based qualitative study.

Authors:  Adonis Wazir; Ibrahim Sandokji; Morten Greaves; Rasha D Sawaya
Journal:  Paediatr Child Health       Date:  2021-04-03       Impact factor: 2.253

4.  Communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.

Authors:  Valerie Shilling; Paula R Williamson; Helen Hickey; Emma Sowden; Michael W Beresford; Rosalind L Smyth; Bridget Young
Journal:  PLoS One       Date:  2011-07-12       Impact factor: 3.240

Review 5.  Key stakeholder perceptions about consent to participate in acute illness research: a rapid, systematic review to inform epi/pandemic research preparedness.

Authors:  Nina H Gobat; Micaela Gal; Nick A Francis; Kerenza Hood; Angela Watkins; Jill Turner; Ronald Moore; Steve A R Webb; Christopher C Butler; Alistair Nichol
Journal:  Trials       Date:  2015-12-29       Impact factor: 2.279

6.  Teleconsent: A Novel Approach to Obtain Informed Consent for Research.

Authors:  Brandon M Welch; Elizabeth Marshall; Suparna Qanungo; Ayesha Aziz; Marilyn Laken; Leslie Lenert; Jihad Obeid
Journal:  Contemp Clin Trials Commun       Date:  2016-03-31

7.  An online survey to assess parents' preferences for learning about child health research.

Authors:  Lisa Knisley; Anne Le; Shannon D Scott
Journal:  Nurs Open       Date:  2021-08-12

8.  A comprehensive systematic review of stakeholder attitudes to alternatives to prospective informed consent in paediatric acute care research.

Authors:  Jeremy Furyk; Kris McBain-Rigg; Bronia Renison; Kerrianne Watt; Richard Franklin; Theophilus I Emeto; Robin A Ray; Franz E Babl; Stuart Dalziel
Journal:  BMC Med Ethics       Date:  2018-11-20       Impact factor: 2.652

9.  How experience makes a difference: practitioners' views on the use of deferred consent in paediatric and neonatal emergency care trials.

Authors:  Kerry Woolfall; Lucy Frith; Carrol Gamble; Bridget Young
Journal:  BMC Med Ethics       Date:  2013-11-06       Impact factor: 2.652

  9 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.