Hospice staff members' views on conducting end-of-life research

Abstract

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.

Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

“…Most studies (14) based their findings on individuals’ directly reported experiences of participating themselves in a research study. The other studies approached the topic indirectly by enquiring about attitudes [15,16], by enquiring about participants’ settled opinions or ways of thinking about research; or asking hypothetical questions [17-20] to respondents where they are asked about a supposed situation where people who receive palliative care are invited to participate or are participating in research. These categories are denoted in Table 2 as D (direct), A (attitudinal), and H (hypothetical).…”

“…Kirsch et al conducted a cross-sectional anonymous survey with hospice staff to gain insight into staff’s attitudes, beliefs and values about research with the patients they cared for and their families. They found that staff were largely supportive of research, but they acknowledged a mix of protectionism towards patients and not having enough time for research as barriers to participation [15]. Williams et al focused on hospice patients and carers and compared their interest in research with ambulatory senior citizens.…”

“…All of the studies that evaluated willingness to participate in EoL care research showed positive outcomes across the different parties involved [15-20,22,25,28]. The majority of patients were willing to take part in research [15-20,22,25,28] and their informal carers were supportive of this [17,18].…”

“…The majority of patients were willing to take part in research [15-20,22,25,28] and their informal carers were supportive of this [17,18]. Also hospice staff and hospice organizations were found to have positive attitudes towards participating in research [15,16]. The studies that reported on health professionals showed the most equivocal results [15,34].…”

Improving the evidence base in palliative medicine: a moral imperative

“…Certainly there is a positive attitude to research in the abstract—most participants in Kirsh’s16 study agreed strongly that they would be supportive about research involving patients or families, they were also clear that they were protective of patients and more practically that their clinical workload precluded them from active support or involvement. As Fine17 points out, the gatekeeping role by clinical staff may itself be immoral:…”