Compassion and vigilance: Investigators' strategies to manage ethical concerns in palliative and end-of-life research

Susan Hickman, Juliana C. Cartwright, Christine A. Nelson, Kathleen Knafl

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

Background: Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods: A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings: Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions: Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.

Original languageEnglish
Pages (from-to)880-889
Number of pages10
JournalJournal of Palliative Medicine
Volume15
Issue number8
DOIs
StatePublished - Aug 1 2012

Fingerprint

Research Personnel
Terminal Care
Biological Science Disciplines
Research
Organized Financing
Research Ethics Committees
National Institutes of Health (U.S.)
Interviews
Population

ASJC Scopus subject areas

  • Medicine(all)
  • Anesthesiology and Pain Medicine
  • Nursing(all)

Cite this

Compassion and vigilance : Investigators' strategies to manage ethical concerns in palliative and end-of-life research. / Hickman, Susan; Cartwright, Juliana C.; Nelson, Christine A.; Knafl, Kathleen.

In: Journal of Palliative Medicine, Vol. 15, No. 8, 01.08.2012, p. 880-889.

Research output: Contribution to journalArticle

Hickman, Susan ; Cartwright, Juliana C. ; Nelson, Christine A. ; Knafl, Kathleen. / Compassion and vigilance : Investigators' strategies to manage ethical concerns in palliative and end-of-life research. In: Journal of Palliative Medicine. 2012 ; Vol. 15, No. 8. pp. 880-889.
@article{82911f63b81148359f2606d4a456bcc7,
title = "Compassion and vigilance: Investigators' strategies to manage ethical concerns in palliative and end-of-life research",
abstract = "Background: Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods: A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings: Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions: Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.",
author = "Susan Hickman and Cartwright, {Juliana C.} and Nelson, {Christine A.} and Kathleen Knafl",
year = "2012",
month = "8",
day = "1",
doi = "10.1089/jpm.2011.0515",
language = "English",
volume = "15",
pages = "880--889",
journal = "Journal of Palliative Medicine",
issn = "1096-6218",
publisher = "Mary Ann Liebert Inc.",
number = "8",

}

TY - JOUR

T1 - Compassion and vigilance

T2 - Investigators' strategies to manage ethical concerns in palliative and end-of-life research

AU - Hickman, Susan

AU - Cartwright, Juliana C.

AU - Nelson, Christine A.

AU - Knafl, Kathleen

PY - 2012/8/1

Y1 - 2012/8/1

N2 - Background: Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods: A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings: Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions: Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.

AB - Background: Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods: A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings: Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions: Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.

UR - http://www.scopus.com/inward/record.url?scp=84864585236&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84864585236&partnerID=8YFLogxK

U2 - 10.1089/jpm.2011.0515

DO - 10.1089/jpm.2011.0515

M3 - Article

C2 - 22731516

AN - SCOPUS:84864585236

VL - 15

SP - 880

EP - 889

JO - Journal of Palliative Medicine

JF - Journal of Palliative Medicine

SN - 1096-6218

IS - 8

ER -