Issues and dilemmas in conducting research with vulnerable home hospice participants

Abstract

Purpose: To describe issues and dilemmas related to nonparticipation, attrition, and needs for assistance in research with vulnerable home hospice participants.

Design and methods: Retrospective analysis, with descriptive statistics of the frequency of issues and dilemmas that occurred in a research study with a vulnerable population.

Findings: From a group of 113 potential participants, 16 (14.1%) people who gave initial consent were unable to participate or were lost to the study (subset I) for the following reasons: unable to give informed consent, cognitive disturbance, and physical distress. Of the 97 participants who completed testing, 28 (28.8%) required assistance (subset II) because of poor vision, physical weakness, and other physical impairments.

Conclusions: Loss of potential participants limited this study and hampered effect size. Research with home hospice patients required careful assessment for symptoms that precluded informed consent. Issues with cognition indicated need for a tool to assess mental acuity. Although several participants required assistance, those who completed testing expressed gratitude at being able to contribute information that they believed would benefit others.