Literature DB >> 24879998

Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards.

Amy P Abernethy1, Warren H Capell2, Noreen M Aziz3, Christine Ritchie4, Maryjo Prince-Paul5, Rachael E Bennett2, Jean S Kutner6.   

Abstract

Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work.
Copyright © 2014 American Academy of Hospice and Palliative Medicine. All rights reserved.

Entities:  

Keywords:  Palliative care; human subjects protection; institutional review boards; research ethics

Mesh:

Year:  2014        PMID: 24879998      PMCID: PMC4247357          DOI: 10.1016/j.jpainsymman.2014.05.005

Source DB:  PubMed          Journal:  J Pain Symptom Manage        ISSN: 0885-3924            Impact factor:   3.612


  38 in total

1.  Ethical considerations in research with bereaved families.

Authors:  R Steeves; D Kahn; M E Ropka; C Wise
Journal:  Fam Community Health       Date:  2001-01

2.  Are hospices ready to participate in palliative care research? Results of a national survey.

Authors:  David J Casarett; Jason Karlawish; Karen B Hirschman
Journal:  J Palliat Med       Date:  2002-06       Impact factor: 2.947

3.  Ethical considerations and barriers to research in surgical palliative care.

Authors:  Robert S Krouse; Alexandra M Easson; Peter Angelos
Journal:  J Am Coll Surg       Date:  2003-03       Impact factor: 6.113

4.  Research sensitivities to palliative care patients.

Authors:  J Addington-Hall
Journal:  Eur J Cancer Care (Engl)       Date:  2002-09       Impact factor: 2.520

5.  Patients' willingness to participate in symptom-related and disease-modifying research: results of a research screening initiative in a palliative care clinic.

Authors:  Roxane Crowley; David Casarett
Journal:  Cancer       Date:  2003-05-01       Impact factor: 6.860

6.  Instituting a research ethic: chilling and cautionary tales.

Authors:  Philip Pettit
Journal:  Bioethics       Date:  1992-04       Impact factor: 1.898

Review 7.  Voluntariness in clinical research at the end of life.

Authors:  Manish Agrawal
Journal:  J Pain Symptom Manage       Date:  2003-04       Impact factor: 3.612

8.  Obtaining informed consent for cancer pain research: do patients with advanced cancer and patients with chronic pain have different concerns?

Authors:  David Casarett; Jason Karlawish; Pamela Sankar; Karen B Hirschman; David A Asch
Journal:  J Pain Symptom Manage       Date:  2002-11       Impact factor: 3.612

9.  Methodologic issues in collecting data from debilitated patients with cancer near the end of life.

Authors:  Susan C McMillan; Michael A Weitzner
Journal:  Oncol Nurs Forum       Date:  2003 Jan-Feb       Impact factor: 2.172

Review 10.  Human research ethics committees: issues in palliative care research.

Authors:  Susan Lee; Linda Kristjanson
Journal:  Int J Palliat Nurs       Date:  2003-01
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  6 in total

1.  Association between the Development of Hospice and Palliative Care and Government-Funded Research Priority: Taiwan-Based Example.

Authors:  Ming-Chieh Cho; Po-Chin Yang; Yueh-Hsin Wang; Hsiao-Ting Chang; Ming-Hwai Lin
Journal:  Healthcare (Basel)       Date:  2022-06-16

2.  When Should Neuroendovascular Care for Patients With Acute Stroke Be Palliative?

Authors:  Michael J Young; Robert W Regenhardt; Leonard L Sokol; Thabele M Leslie-Mazwi
Journal:  AMA J Ethics       Date:  2021-10-01

3.  Methodological challenges in conducting instrumentation research in non-communicative palliative care patients.

Authors:  Karen Snow Kaiser; Deborah B McGuire; Timothy J Keay; Mary Ellen Haisfield-Wolfe
Journal:  Appl Nurs Res       Date:  2019-11-06       Impact factor: 2.257

Review 4.  Reality of evidence-based practice in palliative care.

Authors:  Claire Visser; Gina Hadley; Bee Wee
Journal:  Cancer Biol Med       Date:  2015-09       Impact factor: 4.248

Review 5.  Dying persons' perspectives on, or experiences of, participating in research: An integrative review.

Authors:  Melissa J Bloomer; Alison M Hutchinson; Laura Brooks; Mari Botti
Journal:  Palliat Med       Date:  2017-12-13       Impact factor: 4.762

6.  The Relationship of Post-traumatic Stress Disorder to End-of-life Care Received by Dying Veterans: a Secondary Data Analysis.

Authors:  Kathleen E Bickel; Richard Kennedy; Cari Levy; Kathryn L Burgio; F Amos Bailey
Journal:  J Gen Intern Med       Date:  2019-12-02       Impact factor: 5.128

  6 in total

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