Why is high-quality research on palliative care so hard to do? Barriers to improved research from a survey of palliative care researchers

Abstract

Background: Substantial agreement has been achieved on research priorities in palliative care over the past 15 years, as evidenced by consensus conferences and systematic reviews. Despite the presence of a widely endorsed research agenda, however, addressing the gaps in scientific knowledge has progressed slowly, suggesting that researchers face significant obstacles to conducting high-quality research on the most pressing topics in the field.

Objective: To systematically identify barriers to improved and expanded palliative care research as reported by researchers.

Design: Semistructured telephone interviews to solicit barriers to research in palliative care.

Setting/subjects: A purposive, interdisciplinary sample of 61 leading researchers in palliative care.

Measurements: Interviews were transcribed and analyzed using standard qualitative methods.

Results: Respondents named five barriers impeding progress: (1) funding, (2) institutional capacity, (3) researcher workforce, (4) challenges related to the topic and population (e.g., attrition, heightened human subjects protections), and (5) public and professional misunderstanding of palliative care and aversion to topics related to serious illness and end-of-life.

Conclusions: Research in palliative care is being held back by significant barriers that require the attention of institutions and funders. The consensus within the interdisciplinary sample indicates that concentrated effort to address barriers related to funding and researcher workforce could facilitate progress on established research priorities. More research is needed on viable strategies for overcoming the identified barriers.