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.