Interest in research participation among hospice patients, caregivers, and ambulatory senior citizens: practical barriers or ethical constraints?

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.