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Hospice staff members' views on conducting end-of-life research

Published online by Cambridge University Press:  12 May 2005

KENNETH L. KIRSH ,
ROBERT WALKER ,
SUSAN SNIDER ,
SHERRI WEISENFLUH ,
GRETCHEN M. BROWN  and
STEVEN D. PASSIK
KENNETH L. KIRSH
Affiliation:
Symptom Management and Palliative Care Program, Markey Cancer Center, University of Kentucky, Lexington, Kentucky
ROBERT WALKER
Affiliation:
Center on Drug and Alcohol Research, University of Kentucky, Lexington, Kentucky
SUSAN SNIDER
Affiliation:
Hospice of the Bluegrass, Lexington, Kentucky
SHERRI WEISENFLUH
Affiliation:
Hospice of the Bluegrass, Lexington, Kentucky
GRETCHEN M. BROWN
Affiliation:
Hospice of the Bluegrass, Lexington, Kentucky
STEVEN D. PASSIK
Affiliation:
Symptom Management and Palliative Care Program, Markey Cancer Center, University of Kentucky, Lexington, Kentucky
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Abstract

Objective: Hospice staff members have concerns about the appropriateness of enrolling terminally ill people in research studies. These concerns can have profound implications for the advancement of palliative and hospice care as they can impede the empirical investigation of interventions for improving the quality of life of patients with advanced disease. This survey study was designed to examine hospice staff attitudes, beliefs, and values about research with their patients and family members.

Methods: This study utilized a cross-sectional, anonymous survey design to measure hospice staff members' beliefs, attitudes, and values. The survey contained questions derived by hospice and palliative care experts from their experience and review of the literature. It was handed out at staff meetings and returned via mail. The survey contained 14 questions and was able to be completed in less than 5 min.

Results: A total of 225 participants (56.25% response rate) completed the survey and were included in the data analysis. Hospice staff members were largely supportive about the idea of conducting research with patients and family members (mean agreement of 4.08–4.44 on several perception items about research on a 1–5 scale). They also acknowledged a mixture of being protective of controlling access to patients (52% wanted to be the ones to approach patients) and not having enough time for research (59% either had no time or would be willing to spend no more than 10 min on research).

Significance of results: Although many of the opinions derived from the survey appear to indicate a willingness to embrace research in a hospice setting, significant barriers, especially time constraints and protective attitudes, remain. Educational efforts and firsthand involvement in the research process might be a useful first step in attempting to address these barriers and traditionally held beliefs against using hospice patients and families in research.

Keywords

HospiceStaff perceptionsResearch
Type
Research Article
Information
Palliative & Supportive Care , Volume 2 , Issue 3 , September 2004 , pp. 273 - 282
Copyright
© 2004 Cambridge University Press

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