Objectives: The purpose of this survey study was to explore hypothetical interest in research
participation among hospice patients and caregivers compared to ambulatory senior
citizens.
Design: Cross-sectional survey.
Setting: Twenty-one community-based hospice offices, a university medical center geriatric
ambulatory care clinic, and 3 community-based senior citizen centers.
Participants: Participants were hospice patients, caregivers, and ambulatory senior citizens
not enrolled in hospice.
Measurements: Using a self-administered questionnaire, participants rated their interest in
participating in survey/interview and therapeutic studies, identified potential benefits and
barriers to research participation, and reported their preferences for who they would want to
approach them about research participation.
Results: Forty-six percent of hospice patients and 60% of caregivers reported an interest in
interview or survey research participation; 45% and 57%, respectively, expressed interest in
therapeutic research. Compared to hospice patients, caregivers reported higher rates of personal
interest in both survey research (p =< 0.001) and therapeutic research (p=<0.001) and
were more likely to report that the hospice patients they cared for would be interested (p =
0.005 and p = 0.027). Younger hospice patients were more favorably disposed toward both
survey and therapeutic research participation than hospice patients over the age of 75 (p =
0.063 and 0.011). The proportion of older hospice patients showing interest in research did
not differ significantly from ambulatory senior citizens for either type of research (p = 0.56,
0.98).
Conclusion: This study suggests that many hospice patients are interested in research participation
and are able to articulate benefits and barriers, which supports the inclusion of this
population in research.
