This research article, titled “Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals” by Walshe et al., published in BMC Palliative Care in 2024, delves into the critical need for high-quality research evidence to drive palliative care provision. The authors emphasize that improving the evidence base in palliative care is a “moral imperative,” ensuring effective treatments are offered and futile ones are avoided. While much existing research on this topic has focused on challenges related to patient and carer recruitment, such as concerns about over-burdening vulnerable individuals or staff feeling ill-prepared to discuss research, this study highlights that staff and organizational issues affecting research involvement remain underexplored. Palliative care is known to be historically under-funded compared to research focusing on the prevention or cure of other life-limiting illnesses. Furthermore, staff may perceive research as an “add on” to their clinical role and feel they lack the necessary knowledge, skills, and expertise to be involved, especially given increasing clinical pressures. This study therefore aims to contribute to a deeper understanding of the professional and organizational factors that either hinder or support the conduct of palliative care research.
The study employed a mixed-methods design, utilizing a cross-sectional online survey and working groups that used nominal group techniques. Participants, recruited from North West England, included professionals interested in palliative care research, working as generalist or specialist palliative care providers, or as palliative care research staff. A significant finding from the survey (n=293) was that while 75% of participants were not active in research, 73% expressed a desire to increase their research involvement.
The research identified four key overarching areas of barriers to conducting palliative care research:
- Lack of organizational research culture and capacity: This was the top identified barrier, highlighting issues such as research not being prioritized, insufficient protected time for staff to engage in research due to clinical pressures and staffing shortages, and a lack of buy-in from senior management. The absence of a “research champion” within organizations was also noted.
- Research knowledge: Professionals often have a limited understanding of research processes and lack the necessary skills, with challenges in continuing to develop these skills beyond initial academic qualifications. There is a clear need for mentorship, support, and accessible, tailored training resources.
- Research infrastructure and collaborations: Palliative care research was found to have a weak infrastructure, with few studies in the National Institute for Health Research (NIHR) portfolio. Hospices, often charitably funded, face significant financial implications and are reluctant to divert funds from direct patient care, perceiving research as a “nice to have” rather than a priority. The lack of collaborative opportunities and complex governance arrangements further impede research efforts.
- Patient and public perceptions of research: Concerns were raised about assumptions that research is not occurring in palliative care, or that the end of life is an inappropriate time for participation. Staff may also feel oversensitive about approaching vulnerable patients and relatives. However, counter-arguments highlighted that patients often enjoy participating and find it beneficial.
Conversely, the study identified key facilitators that could address these challenges, including dedicated research staff, active research groups, and opportunities for collaboration and networking. Specific facilitators noted in the survey included palliative care research information networks, seminars, collaborations with other centers, availability of resources, supportive management, staff cover, access to funding, mentorship programs, and attending research conferences.
The study concludes that professionals in palliative care are genuinely eager to be active in research, but they are significantly hindered by a lack of time, skills, and adequate support for building research capabilities and fostering collaborations. A crucial takeaway is that the identified barriers appear to be largely unchanged from over a decade ago, indicating a stagnation in progress. The authors strongly advocate for a fundamental shift in organizational culture to truly enhance palliative care research capacity and enable collaborative opportunities across clinical and research settings. They argue that organizations must recognize and integrate research into their core operations, protecting time and resources for research activities. The research suggests that investing time and funding to address these known barriers will yield substantial benefits in terms of staff satisfaction, organizational performance, and, most importantly, the quality of care provided to patients and their families.
Reference: Walshe, C., Dunleavy, L., Preston, N., Payne, S., Ellershaw, J., Taylor, V., Mason, S., Nwosu, A. C., Gadoud, A., Board, R., Swash, B., Coyle, S., Dickman, A., Partridge, A., Halvorsen, J., & Hulbert‑Williams, N. (2024). Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals. BMC Palliative Care, 23(159). https://doi.org/10.1186/s12904-024-01488-2
