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

Walshe, Catherine and Dunleavy, Lesley and Preston, Nancy and Payne, Sheila and Ellershaw, John and Taylor, Vanessa and Mason, Stephen and Nwosu, Amara and Gadoud, Amy and Board, Ruth and Swash, Brooke and Coyle, Seamus and Dickson, Andrew and Partridge, Andrea and Halvorsen, Jaime and Hulbert-Williams, Nick (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 (1): 159. ISSN 1472-684X

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Abstract

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.