Growing palliative and end-of-life care research in the United Kingdom: Findings from a mixed methods survey.

Abstract

Globally the number of people with an advanced progressive illness is increasing. Research is essential to inform policy, services and clinical practice to meet their needs. We investigated researcher perspectives on conducting palliative and end-of-life care research in the United Kingdom and what is needed to grow this field. We conducted a mixed-methods online survey of individuals conducting palliative and end-of-life care research in an academic institution or any care setting. Quantitative data were analysed descriptively, while qualitative data from open-ended questions were analysed using a Framework Method. Overall, 256 people involved in palliative and end-of-life care research responded (80% female, 85% white, 83% aged over 35). Most worked at a university (79%), 67% worked full-time, 47% had a permanent contract and 9% were clinical academics. Many reported positive aspects of their working environment, such as a collaborative culture and research rigour. Nearly all (90%) wished to continue palliative and end-of-life care research during the next five years, however only 69% believed this was likely. Most common barriers were lack of funding (56%), heavy workload (42%), job insecurity (39%), and limited career progression opportunities (33%). To sustain and grow research activity, participants identified a need for: (i) Greater visibility of palliative and end-of-life care as a vital research field; (ii) Increased funding to support those undertaking palliative and end-of-life care research, across career stages and disciplines; (iii) Increased opportunities for collaboration and networking; (iv) Protected research time, and (v) Support to build a more diverse research community. Despite a committed workforce, palliative and end-of-life care research lacks visibility and funding. Increased visibility through knowledge exchange and impact activities, alongside more targeted research funding opportunities, are essential to build research capacity for the future.