Interest in Research Participation among Hospice Patients, Caregivers, and Ambulatory Senior Citizens: Practical Barriers or Ethical Contraints?

Abstract

The purpose of this survey study was to explore hypothetical interest in research participation among hospice patients and caregivers compared to ambulatory senior citizens. Cross-sectional survey. Twenty-one community-based hospice offices, a university medical center geriatric ambulatory care clinic, and 3 community-based senior citizen centers. Participants were hospice patients, caregivers, and ambulatory senior citizens not enrolled in hospice. 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. 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). 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.